My Experience

Having had Keratoconus for ten years, and as the cornea has continued to steepen throughout those years and as I have had a Corneal Hydrops as well, my experience takes a while to explain. It is geared to be as comprehensive as possible as I have gone through most stages of the condition and have made plenty of mistakes you can learn from and found some priceless nuggest of information you can use for yourselves. To help you navigate, I have split the page up into stages and you can click on any of the stages listed below to jump right to that bit. Or you can read it all in one glorious go. I hope it proves useful to you!

Stage One: Diagnosis
Stage Two: Soft Contact Lenses
Stage Three: Problems With Soft Contact Lenses
Stage Four: Soft/Hybrid Lenses
Conjunctivitis
Stage Five: Rigid Gas Permeable Lenses
Moorfields Eye Hospital
Stage Six: Corneal Hydrops Part One
Stage Seven: Scleral Lenses
Corneal Transplant
Stage Eight: Scleral Lenses Plus Glasses
Stage Nine: Corneal Hydrops Part Two
August 2011
February 2012

Stage One: Diagnosis

I was diagnosed with Keratoconus when I was 17. I’d had a bit of trouble seeing the blackboard at college for quite a while and had gone for an eye check-up at the local opticians, thinking I was a bit short-sighted. This appeared not to be the case as, without explaining why, I was then sent to the eye department at the local hospital where I spent a long morning doing tests. The verdict was given to me by a kindly old doctor who asked me if I wanted the good news or the bad news. Feeling I needed some sugar for the pill, I went for the good news.

“You don’t have to wear glasses,” he said. And he smiled. I smiled too. Then he stopped smiling.

“Bad news is you have a progressive and degenerative corneal disorder called Keratoconus.”

I stopped smiling.

Obviously, I didn’t have any idea as to what Keratoconus was. I had never heard of it, neither had anyone else I knew. The doctor described it as having an eye like a rugby ball instead of a football. In those early days, my cornea was only beginning its journey, but now I can see how apt a description this is.

He restricted his explanation to this rudimentary level, though he added that the condition was relatively rare. So, with that, and aside from asking the now oft-asked “Does anyone in your family have it?” (the answer being no, but Moorfields are currently trying to isolate whether there is a genetic link, for more details email me), he packed me on my way. Looking back, a detailed description of how the Keratoconus would possibly progress, and the complications involved in that, might have been useful. But Keratoconus is unique to each person. It may never get steeper than a light incline, so why worry a 17 year-old boy with talk of corneal transplants? I was happy with my basic explanation. Ignorance, after all, is bliss.

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Stage Two: Soft Contact Lenses

I was referred to a local optician, Colin Peet, who was based in Cosham, Portsmouth, and it was here that my ‘treatment’ was carried out for the next few years. This practice of private opticians doing NHS work is, as far as I can tell, very common. Going to a local optician is, after all, much less hassle than travelling to the local hospital and hospitals themselves tend to be slow and unfriendly places.

At Colin Peets’ I had my cornea mapped by a machine that measures the corneal topography (its shape), which regurgitated a receipt with my eyes’ vital statistics printed on. My left eye was much more advanced than my right (more of which later). It is normal for one of the eyes to be further along the road like this.

It was decided that soft lenses would be the best option at this stage. These are relatively large compared to the common lenses supplied for short/long sightedness and are not hard but squidgy and squashable.

When they arrived, I spent a good few hours trying to get them in and out of my eyes. Being slightly squeamish and having never touched my eyeball before, it was the getting out that I had most trouble with. It was something that took a few weeks to get totally used to, but like every other stage of my Keratoconus, after the initial difficulties it become second nature very quickly – no matter how much of an impossibility that seems sometimes. Perseverance is key.

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Stage Three: Problems With Soft Contact Lenses

So, I was supplied with my first set of lenses. A soft pair that you could squidge and squash and pretty much abuse to your heart’s content. They corrected my vision and I didn’t have too many worries. Until I lost them. At 17 and 18 years old, it is very easy to lose your lenses. Alcohol, alas, is the main factor. I lost my lenses a lot.

But other factors were also affecting the success of the lenses. They tore very easily. This meant you could walk down the road and suddenly half your lens would flap out like a door opening – more of a shock for those watching and thinking your eye was peeling off than you yourself.

A healthy dose of Hayfever also ensured I rubbed my eyes a lot. This not only increased the occurrences of tearing, but also encouraged infection. It is not until a dose of conjunctivitis has robbed you of your lenses that you realise what a pain, and how debilitating, not being able to put on a pair of glasses can be.

All this turned out to be a useful learning experience. I see these first lenses as my “Welcome to Keratoconus” lesson. You see, my eyes were not content at a gentle incline. Rather, they were intent on hurtling as quickly as possible to the Mont Blanc of steepness in terms of the curve of my eye. For two or three years, my prescription changed every two months. The staff at Colin Peet’s surgery and I became firm friends, exchanging Christmas cards and bringing back presents from holiday. (Indeed, having played a rather aggressive game of football in the South of France, I rang them from my holiday with a plea to send out a replacement lens for one that was no doubt now wedged onto the bottom of someone’s trainer).

You can’t go on changing prescription every few months for very long. And it became clear that the soft lenses quickly became unpractical. They didn’t give me the right standard of vision and they were doing nothing to halt the march of the degeneration of my cornea.

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Stage Four: Soft/Hard Hybrid Lenses

Hence, I moved to a soft/hard hybrid lens: a hard lens centre bound on to a soft lens skirt. These were trickier to put in and take out, and they required a much more delicate touch, but they were just as comfortable. The main problem was that the  bind between the hard egg yolk centre of the lens and its soft skirt was liable to tear. Which it did fequently. However, it was with these lenses that the condition began to slow slightly and my visits to the optician became less frequent.

They lasted me throughout university. Not one pair, you understand, for drinking and the lens’ propensity to tear along the binding line (an extremely painful occurrence where the cornea is pinched by the soft and hard lenses where the binding has come apart) meant I had many versions of my lenses. Also, my eyes had by no means given up on their steepening ambitions, so there were plenty more prescription changes with them becoming steeper and steeper lens fittings.

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Conjunctivitis

A note here, I think, about conjunctivitis. It was at university that I had my worse bout of the horrible thing. Unfortunately, due to the reliance on lenses, it is something the Keratoconus suffer has to endure. But in my first year of university, I got a particularly bad bout. Your eyes get stuck together, your vision deteriorates and white stuff gets glued to your lenses.

The doctor gave me eye cream. At 4am the next morning, I awoke to the most horrendous eye pain and aversion to light of my life. It was horrible. Four hours later I was sitting in the hospital looking like someone had taken aim at my eye with a particularly large fist and punched me with all the skill and power of Muhammed Ali. It was swollen to the size of a plum. “It’s an eye condition,” I kept repeating to disapproving glares. “I didn’t get in a fight”.

It turned out, the doctors thought, that I was allergic to the conjunctivitis eye cream. Some steroid drops and a couple of days rest and it was back to normal.

The lesson, I suppose, is to make sure your hands and your lenses are cleaned thoroughly. You can get a no-soap alcohol gel that kills bacteria from Boots, which I recommend you carry around with you for your hands in case your lens does a sky dive on the train or other such inconvenient places. You just rub a bit into your hands until it evaporates off and you are clear to cleanly touch lenses and eyes. A small bottle of saline to clean the lens is also a good idea. Aside from that, just make sure you clean your lenses thoroughly each night and clean your lens container each week. Also, since getting Scleral Lenses (see later in this tale), protein removal tablets have become a lifeline. I dunk my lens in saline infused with these tablets on average once a week.

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Stage Five: Rigid Gas Permeable Lenses

When I was 23, my eyes started getting a bit rubbish again. By that I mean I was waving to people thinking they were who they weren’t. My vision was plummeting. I went to the opticians, a new one after the legendary Mr Peet passed away, and was told that the hybrid lenses were now not good enough. I would now be moving to a very small and rigid corneal lens (RGP) that would sit upon my conical cornea like a plate on a stick in a circus balancing act.

Unsurprisingly, my first attempts at putting these in resulted in the lens being catapulted by my eyelids across the surgery room. It took a long time to get the right measurement – we are talking a good 30 minutes in the opticians chair, trying endless lenses that were kept in a large briefcase – but when I did, I found that my vision was extremely good. Apparently, they flatten the cornea slightly, hence giving you better vision.

Initially, they were uncomfortable. They feel like you have dirt scratching your eye ball. But, as with most contact lenses, the discomfort soon passes. And I was unconcerned, anyway, as I loved them. I had sight. And I thought it was all sorted.

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Moorfields Eye Hospital

It wasn’t. A chat with the head of the Portsmouth Eye Department arranged to assess the condition of my cornea (it was a regular appointment rather than anything particularly wrong) got me a referral to Moorfields Eye Hospital in London and the news that I was “probably on route to a corneal graft”.

That was a fun day, believe me. A corneal graft had been mentioned by most of the people who had looked at my eyes over the previous years. My age, the rate of the curve steepening, the scarring caused by the stretching of the cornea as ir gets steeper and the advance of the condition, it all suggested that a graft was a possibility. But this was the first time it had become a concrete slab of reality. And I was, if you excuse the phrase, shit scared.

Moorfields is a dull-looking place. Depressing even. Old people staff every corner offering overpriced drinks. Fortunately, it is also one of the leading eye hospitals in the world.

I have had good experiences and I have had very, very bad experiences at Moorfields. The skill of the doctors is unquestionable, but there is no consistency of treatment. If you are not forceful about your treatment, you see someone different each time, and each person has a different idea of what should be done. Hence, you can swing from despair at having to have a transplant to the jubilation of a new set of lenses that correct your vision in the space of two appointments. I am lucky that, for my lenses at least, I am now regularly seen by the same doctor. For my cornea appointments, however, it’s a different person each time.

The administration side is also extremely slow and the bureaucracy can be frustrating and incredibly inept. But the system, not the staff, is generally the problem. These are busy people yet all are pleasant and friendly if you are pleasant and friendly to them! A frequent feeling is also that they don’t understand how you feel or what it is like. They can seem to downplay the seriousness of your condition and feel that it is fine to be blind for a week or two while you wait for an appointment. Don’t take it. Demand treatment. Don’t feel you are being bolshy: it is your eyes and you need to convey the seriousness of the situation. Once they are persuaded, you will find that things move quickly. Likewise, though, do not bother them with small complaints that you know the cause of.

Lastly, if you find a doctor you feel comfortable with, make every effort to ensure you see that person again, be forceful! Also, remember that no-one knows your eyes better than you, so if you keep schtum and don’t tell them anything, they are not going to be able to help you as much. Tell them everything, no matter how small. I mentioned once about seeing better with sunglasses and the doctor then spent the next hour researching what level of tint brought the best results. It’s worth opening your mouth, as well as your eyes.

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Stage Six: Corneal Hydrops Part One

One winter morning, I put my lenses in, and found that I could not see out of my left eye. It was very misty, like a looming cloud in front of my vision. I was not too worried: it had done something similar before with conjunctivitis. But I decided that, to be safe, I would take myself to Moorfields Eye Hospital and let them have a look.

Corneal hydrops,” the nurse said to me.

“Brilliant,” said I.

I had no idea what she was talking about.

“You have a hydrops,” said a tired and grumpy young doctor.

“What’s that then?” I asked.

Hmmm,” he said. And he turned to his computer and started searching Google. Not the most confidence-inspiring move.

“You’re going to have to have a corneal graft,” he said, nonchalantly, as if he was telling me he would get me a cup of tea. He then gave me some steroids and packed me off.

It was perhaps one of the most appalling experiences of care I have had at a hospital. No information was given and the doctor was so off hand and grumpy that by the time I left I was more angry than worried. It was only thanks to my own research and then the much more professional conduct three weeks later of the corneal surgeon and consultant at Moorfields, Mr Larkin, that the full details emerged.

My cornea had split, fluid had poured between the cornea’s layers, my eye would be a white globe (for the pupil was now missing in action behind a hazy white cloud which covered my eye) for several months, a year, maybe for life, and my vision would be severely impaired. I also could not wear a lens on the eye.

Excellent, I thought. But search around the internet and you learn that it isn’t all bad. A corneal hydrops is a random occurrence that happens from time to time in advanced Keratoconus. It can actually be beneficial as when it heals it can flatten the surface of the eye. And it does heal, eventually. It is just a very, very long process.

For me, I would notice no change for around two months, then my eye would hurt for a few days and at the end of those two days I would notice a change. This has continued since (it is February 2011, four years after the incident, and still it changes). As far as pain initially was concerned, you are meant to get a lot. But I felt very little discomfort sporadically, generally I felt no pain at all.

The problem is where the final scar positions itself. If it is off the centre of your eye, then you are very lucky and will probably have a better and less steep eye than before. My scar rested to the bottom left of my pupil.

For the first couple of years, my vision in darkness was great and my vision in bright sunshine appalling. After two years, things changed. My eyes become stupendous in bright sunshine and awful in darkness. Keratoconus is a funny thing.

And, in all honesty, living with one eye was not too much of a drag. I couldn’t drive, sure, and it was far from ideal, but my right eye performed well and my left eye recovered steadily. That said, now my right eye has deteriorated in visual terms, the loss of my left eye would be much more debilitating.

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Stage Seven: Scleral Lenses

It was around six months after the hydrops that my right eye began catapulting my right lens out of my eye once more. And generally at the most inappropriate of times, including once at London’s Waterloo station as I ran for a train. Dehydration had made my eyes dry and hence as I looked up to see the train time the lens jumped out never to be seen again. I was still not wearing a lens in my left eye at this time due to the Hydrops. Hence, the world was a messy blur.

This was one of the lowest points I think during the course of my time with the condition. You try and not let it affect your life but sometimes it steams its way in anyway. You have to have your mope for 5 minutes, talk to someone and rage against the unfairness of it, then pick yourself up and get on with it. There are frequent low-points and frustrations with the condition, but you have to just battle through them. Keep upbeat, it could be worse!

So, with the lenses not working, I eventually got an appointment at Moorfields, with a new doctor once again, and she ummed and ahhhed for a very long time. She then said:

“Have you thought about scleral lenses?”.

Erm, no. Mainly because I had no idea what she was talking about. But I was prepared to give anything a go rather than having the dreaded operation to give me a new (dead person’s) cornea.

I was led to a little bay with a man called Ken Pullum sat in it. Ken has turned out to be a bit of a legend. He fitted me with two lenses that were the size of two spherical 50 pence pieces. The old, fifty pence pieces. They cover my WHOLE eye. Scary, yes, but these lenses have been about for many, many years, but no-one really knows about them. They sit on the sclera (the white bit) of the eye and do not touch the cornea at all. Instead, there is a large gap which you fill with saline solution. So your eye basically has a bath for the day.

I got measured up by Ken, well I say measured up, he took a look, tried a couple of lenses and got a perfect fit. By eye. It was remarkable and shockingly quick. Two months later (I told you they were slow) I went back and Ken plonked them in my eyes, no trouble. Well, he grabbed my head, put it between my legs and shoved the lens up into my lower lid. So not quite no trouble. I sat back up, though, and I could see the letters on the board clearly. They felt awesome. This was one of those times I left Moorfields a happy man.

You have to increase your wear of scleral lenses very slowly. An hour day one, two hours the next and so on. The trouble was, I couldn’t even get the little bastards in. With these lenses, you have to fill them with saline solution, then bend down and ram them in your eye without any bubbles getting in. At the time, this proved impossible. On my 20th attempt I would still raise my head and see a happily bobbing bubble float across my vision. I quickly became depressed, angry and inconsolable. But I persevered. (For more on this see the Scleral lens tab above)

Eventually, with practice that included my girlfriend videoing me putting them in, I established that I was rocking too far forward and pouring all the saline out before my eye even got near. Instead, you have to keep your hand rock solid in position and bring your eye to the lens. I mastered the art, eventually. . And for a few months it was bliss.

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Corneal Transplant

I went to see Mr Larkin again a few months after getting my scelral lenses. He had a look at my eyes, my scar in the left eye, and sat back. He gave it to me straight. If I was 35, he would not recommend a corneal graft. My eyes would not change any more at that age, and I was surviving comfortably with my scelral lenses. But at 25.,, it was likely my eyes would get steeper. I had a lot of scar tissue. I was young and healthy, so an operation would not be too taxing. I could have a corneal transplant if I wished. How long? I could have one in two months time if I told him now I wished to go through with it.

For a transplant, they cut out a ‘button’ (a round section) of your cornea and insert a donated cornea of the same shape. There are many methods of doing this, which I explain more in the corneal transplant section of the site.

I was surviving ok as I was, and did not see the point in getting a dangerous transplant when I was working, living, and pretty much seeing ok. Also, if a hydrops were to occur in my right eye (very unlikely, but possible), I felt I could ‘survive’ vision wise until the scarring settled down and I could see what I was left with. Not perfect, but ok. I took a month to think it over. I decided it just wasn’t worth it and I would regret it. I am now determined to stay with the lens options until there are no options left.

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Stage Eight: Scleral Lenses Plus Glasses

Then, in November last year, I started to get bubbles floating into my right eye at regular intervals throughout the day. This would be followed by my vision clouding over and big deposits of yellow/white sticky protein build-up sneaking to the corners of my eyes and under the lens (the cause of the clouding). Note that this clouding was only present with the lens in. And when I replaced the saline solution it disappeared. So it was not a hydrops or something else! Just murky saline solution.

I didn’t know this at the time, I went to Moorfields A&E and was told it was an infection. It wasn’t. My lens was now ill-fitting and irritating my upper eye lid. My eye was getting extremely sore and a rash appeared on my upper lid from replacing the saline in my eye every 30 mins. This was extremely frustrating.

So I went off to Moorfields for a new fitting. A slightly smaller scleral les was thought a better option (about the size of a 20p) and I waited hopefully for its arrival. I waited for a few weeks, went in to get it, and found that I could not see anything, though it was a very comfortable fit.

A trip to Ken confirmed my eye had changed and it looked like, despite the fact the new lens fitted superbly, it could no longer correct my vision. I needed a refraction. Best thing to do that? A pair of glasses in front of my lenses.

Several measurements at a local opticians later and I got some glasses. I put them on. And immediately felt like I had drunk ten pints of extra strength lager. Something was up. The optician said to sit it out. I did. I was sure they were wrong. I went back to Moorfields.

The refraction clinic fitted me in and I was soon sat with those attractive optician’s glasses on my face. A few tweaks and suddenly the world was a clearer place. A few weeks later, the glasses arrived. I put them on. VISION! It wasn’t a massive improvement, but it was enough to make computer work and general vision a hell of a lot more pleasent.

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Stage Nine: Corneal Hydrops: Part Two

It was the thing that only ever happens once. Two eyes? Both eyes? No, it’s rare. Very rare. Don’t worry about it.

I woke up at a friend’s house in Bristol. Miles from home. Something wasn’t right. I couldn’t see a lot out of my right eye anyway. But now, well, it seemed even more distorted. I decided to put my lens in.

And there it was. A mark on the lower right of my vision. I’d seen this before. Hydrops. Again. First the left eye then almost exactly two and a half years later it hit my right eye.

That first day, the Sunday, there was no pain. I put my lens (scleral) in all day. The mist which started in the bottom right seeped into the rest of the eye. By the evening it covered my eye. The Monday came.

Monday was horrendous. The pain was extreme. The eye was swollen, light sensitive and stinging like I’d never experienced before. We got the tube, me and my fiancé (now wife), to Moorfields. I sat in the waiting room with two ton of liquid pumping out of my eye and the pain nearly breaking me. Then I saw the doctor.

He first put in a drop, I’m not sure what it was, that took away the pain. It was bliss. It was temporary. He then put in a drop to paralyse the eye muscles so they would not try and focus, causing pain. My pupil became the size of my iris as a result. (It was meant to last 24 hours, it was still diluted four days later, but I am told this is common).

He then prescribed me a number of eye drops and that was me. Come back in a week. We’ll see how you are.

Well after five days the difference between this hydrops and the last one was a marked one. Firstly, the second had pain, the first did not. Why this is I have no idea. The second it had not yet not filled the eye as fully as the first, the white globe is less. It was more of a haze than thunder clouds. And lastly, my vision appeared to be getting better faster in my right eye than it did the left. I’m talking minor improvements here, but improvements still. Day two I saw nothing but light and dark. Day five I could distinguish between objects.

The first month following wasn’t too bad, the steroids (Predsol) and Sodium Chloride drops seemed to keep everything in control. But after a month, they took me off these, and, well, oh dear.

The pain was quite debilitating. But I struggled along at work anyway. I filled bucket bins with tissues as my eye refused to let up its constant watering. People have become accustomed to seeing me with my eye squinted shut or with my fingers over the top of it. I thought the problem was being exacerbated by hayfever so didn’t bother telling the doctors how much discomfort I was in.

Until about another month had passed and I could take it no longer. I rang Ken at Moorfields (London) who said he’d see me the next day. He took one look and saw that something was not right. He found the largest scleral lens he could, stuck it in, and the pain cleared almost instantly. Over the next half hour there was no discomfort at all. Lovely.

But he wanted to run the solution passed the doctors so it was over to see Mr Larkin, the consultant in corneal disease. He had something interesting to say.

Turns out the tear in my right eye is one of the worst they have seen. Ever. I was, peversely, quite pleased I was notable at least and my discomfort was not down to my own weakness (I had always considered myself good with pain). He wasn’t keen on the lens solution, however, so he suggested going back on the steroid drops.

Hence, I had two options. I decided to give the steroids a go first as the risk of a lens was capillaries growing into the cornea and making any future transplant more complicated.

It took almost a week and a half, but the pain began to subside and I am now almost pain free.

Some things I have learnt: the pain was, and still is to a degree, always worse in the morning. This could have been down to two factors as far as I can tell. Me rubbing the eye in my sleep (which I almost certainly do, sleeping on my front with my head in the pillow), or the heat of my morning shower.

The latter seems most likely as my Dad, a doctor, suggested putting a cold compress on the eye when it was painful, the thinking being that heat may have been a factor in the discomfort, as well as the swelling. This seems to have worked. Every time I am in pain I stick a can of lager from the fridge on my eye for around ten minutes and it appears to very quickly solve the problem. Eye lids, sorry. Don’t stick it actually in your eye.

The second thing I have learnt is that the Predsol steroid eye drops, in my case, definitely do seem to work. Their is no research unequivocally proving the worth of steroids for hydrops, but for me, they stopped the pain and the eye appears to be improving much more rapidly than my first hydrops, which was very slow to claw its way back to some semblence of normality. After three months, the top of my eye is clearing, as are the sides. The centre is still completely misted over, but I am hopeful this will soon follow!

Lastly, and I have said it before, with scars on your eyes the best thing is sunglasses! Sunglasses are amazing for giving better vision and for taking away the light sensitiveness. I found a great free little app for the Mac OSX (which I work on for my job) called Screen Shades. This shades my whole screen and allows me to see much much better when sitting at the computer. Just type in Screen Shades for MAC OSX to Google and you’ll find a fair few options of where to download it.

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AUGUST 2011

So, five months later, I can read three lines of the board with my right, hyrdops-affecrted eye unaided. This is more than I could see pre-hydrops and the eye is visibly a lot flatter than before as well. I am starting to think I am spectacularly lucky in this respect – two hydrops one which has resolved fully to give functional vision that in most cases is very good, and the other which seems to be progressing well and is at least giving me a better result than previously. Obviously, the true outcome won’t be known for some time as the eye takes many months to heal, but it is a good start.

Oddly, and I think it is worth noting, my eye cleared in two big surges (it is only half covered now rather than fully covered). Firstly, I was running up the stairs at Covent Garden tube station (there are a hell of a lot of stairs) and near the top my eye suddenly drained substantially and I could see the stairs. Clearly, on stairs, this was not ideal balance wise. But I refrained from falling backwards. Just.

The second surge was when I was doing press ups, and it left my eye half clear of mist. Whether it was just lucky timing or whether it was physical exertion suqeezing out some fluid, I do not know!

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FEBRUARY 2012

Ok, so it’s four years since hydrops number one, and two years since hydrops number two. And around 12 years since Keratoconus first showed itself.

My left eye is now extremely good, better than it probably ever has been since I was 16. As long as the light is right. The brighter the sunlight the better. At night, however, it is not very good as I get very bad splintering on light sources.

My right eye, well. It’s hard to know. Sit me in the opticians and I can read the same line on the chart as I can with my left eye. Put me anywhere else and it struggles. Here at my desk, if I close my right eye I can certainly see the words I am typing – just – be it through a haze. And then If I look around the office I can see the fire exit sign across the room, and I can see everything in an odd, hazy way. I look outside though, on a clear sunny winter’s day, and I can see not a lot. For my right eye is very good in darkness. Not in light.

It is hard to know whether my right eye will get better. It was a much worse bout of hydrops than I experienced with my left eye. And the recovery is certainly a lot slower. At my desk I frequently find I have to close my right eye to see properly, because its half vision is distracting. And sometimes I think it is useless. But other times I find that, given the right light, it is actually very good. Also, when I do close my left eye, I find the longer I close it the better the vision gets, as if my brain is learning to look past the scar. It is odd. (Incidentally, I can definitely see around the scar, the lower half of my vision is much clearer).

Another thing to note is wear time. I wear my lenses, typically, between 8am and 11:30pm, far more than is recommended. And I do pay for it in the sense that my vision deteriorates the longer my lenses have been in. But you don’t get that deterioration until the next day. I have found that giving my eyes a break on a weekend really helps keep up standards during the week.

And yes, I do still get down about my eyes sometimes. Occasionally, it does get too much after a pretty bad “eye day” where computer work was nigh on impossible. But these are offset by good days at other times. It’s a balancing act.

With the hydrops, it is worth noting that when the eye recovers its vision slightly, you will get dizzy as the brain readjusts, sometimes for a few days.

Oh, and I abandoned the glasses. My vision changes too much to get any one prescription to work. It is a nightmare. So it’s just me and a bit of squinting that sees me through at the moment.

As for the future? Well, my last six-month check up showed no change in my eyes since the previous appointment. And that appointment had shown no improvement from the one before that. So the doctors think things might be settling. Hence, I am now on a 12-month check up schedule rather than a six-month. Whether this turns out to be the correct decision, we shall see…..

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JULY 2012

Not much to report other than the horror show that hayfever is causing to my poor eyes. In my experience, the tablets, eye drops and nasal sprays all do very little to help me combat the vision depletion that comes with hayfever and I just have to suck it up! Sunglasses help, as does cold water.

As for where my eyes are, my left scleral lens is now in my right eye and I have a new lens in my left eye – for those that know these things, I am now an F7 left, F6 right. Apparently this does not mean they are particularly worse, it might be that the lens has “settled back” onto my eye. Either way the vision is still decent and I am even finding some improvements in vision at night (i.e. alot less halo effect).

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APRIL 2013

It has been a while – and for that I apologise. The truth is, though, I have little to report. I still have the same fit of scleral lens I had in my last post. I have been switched to 12-month appointments now at Moorfields.

One thing I did want to write about was the changeability of vision. I don’t want people to assume I can see 20:20 every day (I can never see 20:20 🙂 ). The truth is, my eyes change every day – sometimes they are great, sometimes they are not. Tiredness, weat time, hayfever, light conditions – these all effect how well I see. Even heat –  I have noticed that when it is hotter I see less well. The fact is, I have more good days than bad so I tolerate the bad days.

I just started a new job, actually, and I now sit next to a large window. This is not great for my vision as the ambient, all-round light effects my scar and means I see less well. I noticed I was getting an itchy right eye after a few days, and had a build up of what I call crap (the white gunge you get with Sclerals). After some thought, I realised it was because I was squinting with my right eye because of the light. So if you get similar symptoms, this might be the cause!

I also wanted to point out a couple of things.

1. I have these three black dots that always pop up in my vision at this time each year. They are ‘floaters’ and emerge now because of where the sun is in the sky at this time of year. They are not irritating, but they do worry occasionally!

2. I sometimes see a patch of yellow light when I move my eyes too quickly from one area to the next. I have come to think of this as a symptom of the lens – a residual reflection on it. I would be interested to hear if anyone else has something similar.

Lastly – thanks to everyone for the comments and updates. This blog gets around 150 hits per day, which shows that there is a real thirst for knowledge out there. Keep it up!

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325 thoughts on “My Experience

  1. Brian says:

    I am 47 and have had Keratoconus since my teens and have also progressed thru soft, hard, gas permiable and now i am getting my first try at RGP Scleral lens.
    Over the years the left eye which has a cone shape going two diferent directions continues to progressivly get worse (yes still getting worse 30 years later). ANy how i know what exactly how you feel years of bad fitting lens and poor vision light sensitivity and people don’t understand. ANy how Dr. says she can fit me for alittle whil longer before this left eye is to steep to even get a lens on.
    Hang in there!

  2. aaron - U.S.A says:

    Nice site. Useful.
    I’ve been struggling with vision for quite a long time. Only 7 months ago I was diagnosed with Keratoconus and fitted with a Wave contact for my right eye. Works like a charm, but I’ve already purchased 3 :(.
    Still looking for a solution for my left eye as it’s too steep for a Wave contact.

    Good luck to you

  3. David says:

    Hi
    I am writing to thank you for the brilliant effort to document all your experiences .It is really promising and I am so happy to find a place to share my feelings .I am 29 suffering from Keratoconus . I use RGP and my vision is still good .I would like to know if my KC is going to stop its aggravation in older ages or it would take me to more serious levels in coming years. What about “Corneal collagen cross linking with riboflavin”? has anybody tried it ? Any side effects ? My doctors are encouraging me to do so but I really scare . Or What about “Corneal ring segment inserts” ?

    Thanks for the info .. This website is really helpful .

  4. Jennie says:

    Jon and David – Thanks for all the insight and telling of your personal experience. My husband also suffers from Keratoconis and has survived your journey but also has had 2 intact (corneal ring surgerys) to stabilize his cornea so that he can get the cone shaved off in a sense with lasik surgery. Those of you that are not that advanced may want to consider this. (Dr. Gulani in Jacksonville, FL). Unfortunately, my hubby’s cornea is not stable enough for the second part of the surgery so we are looking into the sclera lense. I’m shocked at the $3200 price tag with the majority being for fitting. They say they have to custom make it since his cone is so high. He’s not thrilled about getting a dead mans eye either and at 32 you’re looking at a possible life time of complications. Thanks guys for sharing. I’ll share the stories w/ him since he can’t read a computer anymore. I appreciate it. Feel free to ask about the rings.

    Jennie

  5. jonpsevers says:

    Hi Jennie,

    I haven’t heard about the corneal ring surgerys before. It sounds quite invasive. Has it improved his vision at all? Luckily here in the UK the scleral lenses are on the national health service, so I only pay £100 a year ($165 roughly) to get them fitted and can have as many lenses as I require in that year. It is really sad that your husband has to pay that amount. Scleral lenses I am sure would be of massive benefit to him. If you email me on the “Email me here tab” on the right of this page at the top, I can try and help you get in contact with my physician who might help you with some more information on scleral lenses, as he is at the Moorfields Eye Hospital in London which is one of the world’s leading eye hospitals. The lenses are not perfect, I still have a fair few complications, but as you say they are preferable to an eye operation and they at least give me a chance of prolonging my contact lens use and giving me improved vision. On a good day I can even drive my car! It’s rare but when I can it’s a good feeling!

  6. Imaad says:

    I am so excited to find your website and see that some else has probably gone through something similar. My story is quiet similar to yours 🙂 I am at the stage of Hybrids Synergeyes KC that I have been wearing for a year now, vision is ok around 20/50 but I blink alot and wear the bybrids with a piggy back on Acuvue Hydrogels plaino with no power as the hybrids soft skirt would stick to me eye and gave like a twitching feel.

    Have you considered intacs? whats your taken on them, after reading your experience I am thinking of scleral lenses as well.

    Do you have any idea what could be causing the constant blinking that i get that makes me look like a retard, have you ever experienced it?

    I wish you best of luck with your fight againt KC?

  7. Jose says:

    I applaude you for your initiative of this website.

    I can not believe that those of us who suffer from keratoconus,can not obtain more straight answers from doctors, considering we are in the 21st century.

    My case is not as extreme as yours, but I am getting worse by the year.

    My father was an ophtalmologist who died 34 years ago, when I was 21 . At the time I did not have a keratoconus but simple miopia and astigmatism, my father opposed I wore contact lenses. When he died I used to do a lot of sports and started wearing hard contact lenses. Possibly my condition is due to 32 years of wearing hard contact lenses, in which I probably abused the daily wearing time.

    One thing has improved my sight has been to wear eyeglasses on top of my contact lenses. This has been because I insisted with opthalmologists (I mean it was not their idea), and I had the eyeglasses fitted by a friend of mine. Today eyeglasses are fitted by optometrists and they are not as good as ophtalmologist when they do it with dedication.

  8. keratoconusinfo says:

    Hi

    Glad you found some use for the site. I haven’t really thought about intacs, I think I might be beyond it now! PLus Scleral lenses work really well for me, I hope if you do try them they help you out too!

    As for the blinking, I have no idea! Sounds irritating though. I used to have loads of problems with lenses til I got my sclerals. They are a pain to learn how to use, but when you get there they have been well worth it for me.

    I wish you the best of luck!

  9. keratoconusinfo says:

    I agree that the absence of a stright answer can sometimes be very infuriating! The trouble, I guess, is that there is no one right answer for us with this condition. I used to think there must be, but having met a few sufferers at Moorfields it is amazing how different the condition can be for each person. Sharing your experiences like you have done helps us find some common ground though, so thanks for sharing!

  10. metro says:

    Hi!
    Great effort and great info in the site.

    I was diagnosed with keratoconus 3 months ago, doing a long set of test show that only the right eye was affected and mi Dr advice was to implant corneal rings (intacts: http://www.getintacs.com/)
    The first proccedure was fine, just about 15 minutes, 1 day of sleep and on the next day, after the contact lens (used to help the healing proccess of the cornea) was retired, doesn’t hurt and almost doesn’t feel.
    I have a complication cause the segment is rotating from the desired position and come close to the insertion cut. So, i’d have a second proccedure to re-place the segment, once again, 1 day of contact lens and the vision starts to improve.
    Now i have a 20/25 vision on my right eye (was 20/40 to 20/60).
    But, the segment still moves, the Dr says that is a extreme rare situation but can happend. Tomorrow i have another visit so we can check how many distance the segment moves, if is relativly short, is a go and end of treatment, if the segments moves more, it would be necessary to do another proccedure and this time tie the segment to the cornea with a little suture.

    So, i will told what happends.

    Again, thanks for your effort and good luck to everyone with this disease.

  11. kimberly says:

    I just wanted to wish the author and all those posting the best. I have had kertaconcus for 27 years. We all, in some form or another share the same journey and walk the same path. I just want to encourage you to stay vigilant every day! Celebrate the victorories big and small! Embrace the motto I have lived by, for I see by faith not by sight. Believe it or not embracing that thought has allowed me to truly see the world! Wishing you all life’s best!

  12. Asiri says:

    I am a mother of a son who has just been told that he has keratoconus. We have been to the JF hospital in Oxford. They could not get a reading of the corneal on one eye. Is this common & why would this be. We did not get much advise from the Doctor. He has been told to see if he can get lenses fitted. It is a waiting game. My son is only 20 yrs old & all he want to do is to be a cameraman. Doing well at Uni. So glad to read all your comments & good luck to all of you.

  13. keratoconusinfo says:

    Hi

    They missed my keratoconus first time, but the hospital should be able to deal with it if it is in the early stages and they generally fit lenses successfully so he can live a normal life and become a cameraman if that is what he wants! It hasn’t got in the way of my life and I have very advanced KC, so tell him not to worry too much 🙂 Unfortunately it is always a waiting game with KC, everything takes ages, so stick with it and stay positive and i’m sure they’ll’ get him some lenses sorted.

    Good luck!

  14. Janet Cline says:

    Hi from the U.S.A. , May 2010
    My 20 year old daughter was diagnosed with keratoconus 3/2010. I researched on the Net and we took her to Dr. Brian Boxer-Wachler in Los Angeles in early April. He put an Intacs in the lower part of her “bad” eye, did CK (conductive keratoplasty) in the upper part of that eye, and then followed up with collagen cross-linking (without removing the epithelium). She went from 20/200 in that eye to 20/50 without correction, and she just got glasses and has 20/20 vision. Each of these procedures was quick (10 minutes for the first two, 30 for the second) and there was some discomfort but no pain. Her eyes will continue to change a little for the first six months or so (the cross-linking can improve vision a little and the doctor overcorrects flattening with the CK procedure because it settles in over the first several months) but she is very happy with the results so far – this is all very recent. Dr. BW has had excellent results after five years of doing the corneal cross linking (C3-R); it halts progression of the keratoconus and nothing before has been able to do that.
    I encourage each of you to research, research, research on the Internet and inform yourselves about your disease because many of the doctors just don’t have the current information. We were told that there was nothing my daughter could do but a rgp lens. However, we now are hopeful that her disease will not progress as it would have surely continued to do without the C3-R.

  15. dan says:

    I always ask Ken Pullham if I can put the scleral lens’ in myself cause i too have had my head jammed between my knees as his jcb like arm thrusts a lens in my eye, as well as the ‘playdoe’ gun in my eye.
    This was a bad first impression. (pardon the pun). But Ken is a legend, your right.
    I went to my local opticians last week to find Kens brother as my new optician. As a sibling optical team i think my eyes will only get better.
    PS i know what you mean about the harshness of conjunctivitus. Not only is it a messy sensitive pain in the ass at the best of times but on top of not being able to wear my lens i find myself having some long boring days of shutting my eyes and listening to day time tv which is the finishing blow.

  16. keratoconusinfo says:

    Ken has a brother?! And I thought he was unique. Yeah the days when you can’t wear the lenses are pretty dull. I did try and get to sainsburys without them once which was, shall we say, an experience. I came back with mostly what I went for, which I saw as at least a minor victory. Another favourite of mine is to wear sunglasses at my desk at work if one of the eyes gets conjunctivitus and the other doesn’t, as it minimises the glare and means I can see better (caus of the scar from my hydrops). I was called Stevie Wonder for the week. Or “Cool Dude”. Oh how we laughed.

  17. Crab from Czechia says:

    I was diagnosed with KC when I was 17 (2003), half a year later I got a transplant (right eye), I spent 5 days in hospital then walked home with sunglasses. My vision was blurry and the eye still hurt, but it was manageable. Next few days I spent in a dark room listening to TV and trying to do something with super bright screen of my computer. Two weeks after the surgery I was able to do most of the things and month after the surgery I already played soccer, but I was still very sensitive to bright light, also they had to take away my stiches which should have stayed there for a year, but they were mostly gone anyway. At this time my vision was slightly better than before the surgery, but it improved gradually so it was hard to notice. The surgery certainly slowed down my astigmatism, I’d probably be blind in right eye by now.

    Then in 2008 I had CXL (corneal cross linking). It was my left eye. First they spent 20 minutes playing with laser and injecting some kind of vitamine into my eye – really uncomfortable, but when it started to be pretty annoying it was thankfully over. Then I had to stare (without blinking) into some kind of light for an hour. They constantly wattered my eye with drops so it was OK. Then I walked home. They also gave some painkillers and eye drops. Hour after the surgery the anaesthetic eye drops weared off and I had to use the painkillers, but in a day or two I was completely fine.

    Two years later and there is no progress of keratoconus. My astigmatism is steadily at -7.25 in both eyes. I wear glasses which partially adjust my eyesight (CYL 4.00). It helps my left eye (CXL) only slightly, on the other hand it really boosts my right eye (transplant). Without it I’d have trouble reading. However I want contact lenses now. I hope they’ll do a better job and will also allow me to play soccer a bit less pathetically.

  18. james says:

    i would just like to say how intresting, my husband was diagnoised with kc when he was 10 he is now 40, he was registered blind last sept, vision 1/60 2/60 which is very poor, he has struggled to deal with all the other problems related to kc, but now he has a guide dog, and a quality of life so there is hope, even if the worse happens.

  19. Janet Cline says:

    Hi everyone,
    What, if anything, helps haloing? My daughter had KC (see May 13 entry above) and has bad haloing at night. She wears glasses and hasn’t tried contacts yet.
    Thanks.

  20. Andrew says:

    Hi,

    I have had keratoconus for 20 years on both of my eyes. Im just fine on my right eye but the left eye is almost blind.

    I woke up one morning and I started to see a white cloud on my left eye and I decided that I needed to go to my eye doctor. He explained to me that I have “Corneal Hydrops on my left eye”. As soon as he gave me my prognosis on my left eye, I thought it was something serious. He told me that “The cloudyness would be there around 4 weeks and I should start to see fine after 4 weeks”. Well Im going on 4 weeks and 2 months and nothing has changed. It has become really embarassing because every one looks at me like im an alien.

    Could someone tell me how long the cloudyness last, so it is not noticeable?

    Please Help!!

    Thank You

  21. Andrew says:

    I need to clarify something on my previous post, I meant to say”6 weeeks” not 4 weeks and 2 months.

  22. keratoconusinfo says:

    Hi,

    I’ve had two hyrdops, one in the left first, then one in the right. I had my left eye hydrops 2 years ago and It is still improving even now. The right eye is simlarly clearing.

    For me, on both occasions, the msot dramatic improvements occured in the first six months, then incremental improvements occured every two months or so and continue to do so. In a month, I saw next to no improvement at all and as far as I know you would see very little improvement in 6 weeks! You have to be patient, as i said, mine is still improving and clearing after 2 years. As for people looking at you, just look back 🙂 Doesn’t bother me, is quite a fun talking point sometimes! My elft eye only has a small scar now but my right is still very much a white out!

    I will also say that in both cases my vision has improved as a result of the hydrops, a little loss of colour maybe but the eye itself has flattened with the healing process. So keep your chin up and maybe get a second opinion on your eye!

  23. Pablo says:

    Hi,

    This is a great site and information, thanks really a lot! I have lots of questions. I was diagnosed keratocone when I was 26 and for the next ten years I thought it had more or less stopped and I was doing fine with the gas permeable lenses. But in the last couple of years the right eye is getting worse. The doctors here in Buenos Aires say it is all genetic. Yet anybody knows if stressful conditions of living aggravate the keratocone?

    It also seems that procedures vary according to countries. Here the steps look like: lenses, intacts and transplant. I have not heard about the scleral lenses until I found this site or about the CXL, both seems more common in Europe than in the USA or South America. Can anybody comment more on the CXL?

  24. Jon Severs says:

    Hi Pablo

    Thanks for the comment, I don’t know much about CXl I am afraid, as it’s not something I’ve come across, but I can vouch that Scleral lenses have worked really well for me. I will soon put up a video of me putting them in and talking about them. As for CXL, i hope someone else can help!

    All the best

    Jon

  25. Matt says:

    Pablo,

    The last time I saw my cornea specialist I was told that the CxL (C3R) was done as a trial in the US and that it may be as long as a few years before the process is available if the trial is deemed successful.

    Don’t take my word for it though – this is just my recollection from a conversation a few months ago. I see him again soon and will try to brooch the subject again to see if he is aware of any change in status.

  26. Pat says:

    Great reading everyone’s real experiences about Keratoconus. My son is 24 and has recently been diagnosed. one eye is worse than the other and he uses glasses at present. If it is proven the Keratoconus is progressing (3 month wait), he will go for the Crosslinking. We are in Adelaide South Australia and so far only one private clinic does it. It costs around $1,200 per eye. There is no medical insurance or government assistance at all. The clinic apparently scrape the cornea first. I have read this is not absolutely necessary and can cause damage which in turn can create complications. Has anyone had experience with Crosslinking procedure without scraping cornea first?

  27. Crab says:

    @Pat

    I don’t remember any scraping. In my case the procedure was done in Gemini Eye Center in the Czech Republic. They have this to say about the procedure (the Czech version is a bit more comprehensive than their English version, so I google translated it, but the page is slightly broken afterwards):
    http://translate.google.com/translate?js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&sl=auto&tl=en&u=http%3A%2F%2Fwww.gemini.cz%2Fcz%2Fsluzby%2Flecba-keratokonu%2Flecba-keratokonu-metodou-cxl%2F

    here is their English version:
    http://www.gemini.cz/en/services/keratoconus-treatment/treatment-of-keratoconus-with-cxl-method/

  28. Crab says:

    @Pat

    http://www.gemini.cz/en/services/keratoconus-treatment/treatment-of-keratoconus-with-cxl-method/

    On the right side of the page there is “E-mail us” where you can ask how they do it.

  29. Elizabeth says:

    Thank you for this website! i am also a KC sufferer, for six years now. living in the US. (I was diagnosed at age 42). It has been a frustrating road. The lack of information available to us is appalling and I am myself in the medical profession. I will be getting my scleral lenses tomorrow after years of trial and error with soft lenses, RGPS, surgery, cross linking, etc.

  30. Depressed says:

    hi all…i have kerotaconus diagnosed when i was 16 year old…since then i started wearing my RGP lenses…till nw it does well for me…im currenlty 22 year old…recently i had my CXL…heard its very promising from my doctor. lets see what will be the result after 6 months….hopefully it stopz the progression…

  31. Thank you for every other magnificent article. Where else could anybody get that type of info in such an ideal means of writing? I have a presentation subsequent week, and I am at the look for such information.

  32. robert smith says:

    Just wanted to say what a fantastic article you have written there .I can relate to a lot of what you say .I saw Ken Pullham myself about 20years ago who fitted me with a scleral lens ,must admit I didnt get on well with it at all .Over the years My eye drifted outwards through having hardly any vision and a large scar formed over the eye (not sure if that was hydrops but sounds like it ) anyway after giving it much thought I had surgery last year to coeerect the squint and I had a cornea transplant last week and have to say so far it hasnt been as bad as I thought it was going to be .I allready have a little vision (not great )which will hopefully improve in time .All the best Rob

  33. Chaikha says:

    Hello , i just got diagnosed with KC ( like few hours ago ) and reading the comments is scaring the crap out of me 😦 !

    my doctor explained the solutions to me and i dont know which treatment i shall be doing , i still have to go again . 😦

  34. It’s great to read everybody’s Keratoconus experiences and preferred treatment options. I am a Keratoconus patient myself and decided to take a completely alternative route. I have put down my story in the form of a website and an experiment. Please do go through it and let me know your thoughts. The best way to help one another is by sharing experiences.

  35. Victoria says:

    I am also a keratoconus patient. Lots of good info. One thing I have noticed is since being diagnosed I have had balance issues I always fell off. Is something you ever experienced?

  36. louise messenger says:

    Hi, thank you so much for documenting your journey with KC. I have KC and have just found out about the intacs procedure. Though I am close to being declared legally blind in my right eye, I’ve struggled on wearing glasses alone as I tried the rgp lenses 10 years ago and they just hurt SO MUCH I couldn’t handle it.

    I’ve spent the last 15 years avoiding dealing with my eye condition and living in total denial. I have to do something, and reading about your search for good vision has inspired me.

    I’m also in Adelaide, Australia, and I am really desperate to find the name of the specialist that the lady above found in Adelaide, as I’ve had no luck so far.

    If you can put me in touch with her that would be great.

    Thank you

    Louise.

  37. louise messenger says:

    Hi, thank you so much for documenting your journey with KC. I have KC and have just found out about the intacs procedure. Though I am close to being declared legally blind in my right eye, I’ve struggled on wearing glasses alone as I tried the rgp lenses 10 years ago and they just hurt SO MUCH I couldn’t handle it.

    I’ve spent the last 15 years avoiding dealing with my eye condition and living in total denial. I have to do something, and reading about your search for good vision has inspired me.

    I’m also in Adelaide, Australia, and I am really desperate to find the name of the specialist that the lady above found in Adelaide, as I’ve had no luck so far.

    If you can put me in touch with her that would be great.

    Thank you

    Louise.

  38. Leonardo Torres says:

    It is very courageous of you to open up to the world about your visión and what you have been through!I wish you the best in the future!

  39. Edwordz says:

    I was diagnosed @26yrs i am now 34 .. I wear RGP lenses and over the years I’ve matured my ways on caring for them. I’ve lost about like 6 lenses from them popping out which is frustrating . I work in law enforcement and not a day goes by that I don’t run scenarios of what Ifs with these hard lenses. Anyways I just had intacs procedure done on my left eye very quick and pain less now just awaiting a fitting appointment for RGP lenses I was told the intacs took down the bulging and should prevent my lenses from dislodging .. Il await for results .. Hang in there people I pray everyday, I feel no one understands ..

  40. Sara says:

    Very pleased to read your blog. Have had KC for about 15 years now. Frustrated the heck out the first optometrist who tried to fit me with RGP’s, then piggyback, and we ended up, even, back then with scerals. I’ve been wearing RGP’s again for about 10 years now with reasonable success, though I’ve been told that I do wear them too many hours a day and I do have a bit of scarring, so scerals may again be in my future 🙂 I have seen specialists in the Netherlands, US, the UK, and today in Australia. Today was because of a stubborn bout of conjunctivitis! One thing I notice, a common thread, is that all specialists, and here I echo your Moorfields experience I think, are in a hurry and have no time to take a proper history. And in the process give you a bummer of a day. Thanks again for your blog…. For me, I think I’m going to give the specialists here two fingers. It’s worth getting on a plane and visiting Ken again 🙂 Bye the way, the Screenshades is now also available on the app store…but still available at other sources for free!! Thanks for the tip.

  41. Sara says:

    For Louise in Adelaide:
    Have you contacted Keratoconus Australia?
    Here’s there URL: http://www.keratoconus.asn.au/.
    I contacted them once before and they were very helpful. Good luck.

  42. Matt says:

    Edwordz – I agree regarding your comment about nobody understanding. This has always been one of my challenges. Having to try to explain why you can’t wear glasses… Half the time people just think I am being vain.. Suddenly having to stop everything to address the red hot razor blade (or was it merely a peice of dust?) tearing at your cornea beneath your RGP lens…. Why are you always wearing sunglasses? It’s cloudy today…. etc….

    Sara – I am sorry to hear of your challenges locating decent/patient Optometrists, My experiences over the 30+ years have been fantastic in the numerous areas I have lived in the northeastern US. I have been amazed at how patient many doctors have been with me, going through endless fittings, my constant list of issues….. I am not even sure some of them made any money off me after sending back half a dozen or more lenses during fittings. 🙂 I wish you luck in finding the quality of care you deserve.

  43. Eliana says:

    I just got my Scleral Lenses. This is the first time in my life that I can look around and see everything that was not that esay to claerly see before. I used to wear the Rigid Gas Permeable one but there were really uncomfortable. God Bless Dr. may Davoodi from the Allentown Vision Center that when she received me with my keratoconus she told me right away what will I need. Is just my secondday with them and I put them on and take them off the right way… without bubbles!!! after being with the RGP that were hurting my eyes I din’t feel unsecure to wear these. I am really confident and comfortable of them I don’t feel them at all, is a relief and the best thing my vision is 20/20 for the first time in 30 years!

  44. Christopher says:

    Hi everybody .
    I’m Chris. I live in Canada i was just diagnosed with Keratoconus 3 days ago. I didnt know what to think or say when doctor told me I have a rare illness. I look at Everyones comments and strength it really inspires me to think positive . I’m always going through health issues wondering about myself and sometimes just wanting to die and give up. I sit and wonder I have a daughter who is 9 months I love her with all my heart but I always think what if I can’t see her no more . Meh w.e . All u people are amazing and I’m happy I can write Somewere ,were people will listen and understand how I feel as no1 listens or cares about me . God bless u all and good luck

    Chris….

  45. Victoria says:

    Did u notice vertigo with your issues at all?

  46. Jon Severs says:

    In the form of dizziness I guess yeah, especially going up and down stairs – it sort of throws my head sometimes! It was generally when my hydrops cleared a little and my brain had to readjust

  47. Victoria says:

    I have been diagnosed over 5 years now and it’s getting worse n worse for me and I have vertigo/balance issues very badly and the worse my eyes get I notice my vertigo/balance gets worse…been to the doc and I’m fine ent same thing…it just sucks

  48. Janet Cline says:

    Christopher,
    It’s a big shock to get that KC diagnosis – I was devastated when my daughter was diagnosed at age 20. In the three years since, I’ve been so encouraged by the amazing advances in treatment that are taking place. I feel so much hope that KC will be an inconvenience rather than a limiting factor in her life.

    The Internet is a great place to gather information, and I encourage you to be your own advocate by reading and researching as much as possible. There’s a lot that’s new and exciting, but many, many, many doctors don’t know about the currently available treatments, and it will help if you equip yourself with that knowledge.

    Here’s one article (see link below) that I found especially inspiring. You are so new to this, you may have no idea what it’s saying, but focus on the section at the end of the article titled “A Game Changer ” and the very last sentence which says: “(This treatment will) allow us to stabilize these progressive patients and treat them so they can live normal lives without the visual handicap of keratoconus.”

    http://www.healio.com/optometry/refractive-surgery/news/print/primary-care-optometry-news/%7B2B684613-652C-41B3-BE3A-14A35E7BCBC7%7D/Topography-guided-ablation-a-promising-option-for-patients-withirregular-corneas

    If you can’t get the link to work, Google this: Topography guided ablation: a promising option for patients with irregular corneas.

    Best wishes. I am praying for you.
    Janet

  49. Okinawanchik says:

    Thank you soo much for creating a website and sharing. I was diagnosed at the age of 13 so about 8 years ago. By the time my eye doctor figured out my problem I already had a severe case. They think it may have started in elementary school, it totally explains why I struggled soo much in school, and I was always too shame to admit I couldn’t see the world “normally” so I hid my problem and refused to admit I had a fuzzy vision.

    I’ve seen about 7 doctors so far. I always felt kind of alone suffering because others couldn’t understand the pain and struggle. I totally felt like someone could finally understand when you said you had to explain countless times about not being able to wear glasses. Thank you for being so inspirational and it felt great to read something written by someone who suffered like me versus reading from the point of view of someone who didn’t understand.

  50. Dwayne says:

    I am 23 and I had keratcomus since I was 16 and it’s just getting worse and nobody understand they just call me blind bat and I have to struggle at work to read paper works and to use the computer I can anyone with experience please email me and share there experience with me and let me know what step to take thank you..

  51. Devin Bragg says:

    My name is Devin, I am 14 years old. I was diagnosed with Keratoconus when i was 9 years old.. One of the youngest they have ever seen.. When I was 9 I didn’t have to give up much, because my vision hadn’t really progressed until I was about 12. To this day; i struggle. Next year I am going to be a sophomore in high school. I have an every day trouble of getting made fun of, picked on, etc. I had to give up cheer, gymnastics, softball, almost everything. Doctors told me i would be blind by my sophomore year. I had two surgeries last year, and stop the progression of my vision as of right now. I have literally been through hell and back. When i was 12 i was also diagnosed with chiari malformation, was hospitalized many many many times through out my 8th and 9th grade year. I have a lot on my plate and would love to talk to some of all with Keratoconus! please PLEASE email me! i always have a blog just like this; devingrace.net i would love to hear from one of ya’ll via e-mail.

  52. Lupe Fukofuka says:

    Thank you so much for all this information. Ive had Keratoconus for four years and counting and this year was the first year i ever experienced corneal hydrops. I had it earlier in the year and it cleared in a week and this week it had re-appeared. The first time I was actually afraid but didn’t tell my doctor and the second time round, now, i booked an appointment because the pain is unbearable and it is very uncomfortable. Today was the first day i decided to look online and came across your blog and i love it! I will be asking my eye doctor if he can help with my hydrops. Thank you thank you for enlightening me in this condition =)

  53. Louise says:

    Hi,

    I’m Louise from Adelaide (Australia) and first off, thanks so much for writing this blog. I cried reading it, and it’s so great to read your story, and to read the comments and stories from people all over the world. I feel so much less alone. I have known about my keratoconus for aobut 12 years and – like many people here – I have struggled to explain how frustrating daily life can be. My left eye is not tooooooo bad, and till about 2 years ago was quite stable (i’m 37 so should be stabilising by now) but the last 3 years it’s started deteriorating at about 0.5 point a year. My right eye however, is terrible, and now completely untreatable with glasses now, and I can’t wear contacts. (I’ll get to that)

    At first my progression seemed slow, I tried my first lot of RGP lenses in 2003, but they were so painful – they would pop out randomly, every blink was agony, and they would fill with mucus underneath and it would be like looking through a dense mist. After about 6 months of what felt like daily torture, i thought i’d just live without. I didn’t think to have glasses as the optom at the hospital that fit me with contacts told me glasses couldn’t help keratoconus. Cut to 2006, when I nearly had a serious accident driving at night due to the excessive halo’s adn streaking of lights. Realising just how bad I was getting, (if i closed my left eye, i couldn’t really make out my own face in the mirror) I went back to the hospital, and the optom I saw this time said I could wear glasses, but I wouldn’t get the same clarity of vision with them as I would with the contacts. I was happy to try that as an alternative, and have been wearing glasses since then.

    This past year I have really, really struggled with my vision, and glasses just werent’ helpin anymore, so I decided to start researching keratoconus (which led me to this blog!) to see whether there had been many developments in the past few years. I was so excited when i read about kerarings and the different lenses that were now available! I researched and booked into see a corneal specialist here in Adelaide, who reccommended me to a specialist contact lens fitter as he felt I wasn’t fitted properly initially. I felt like finally there was going to be a solution! However, after weeks and weeks of trials with scleral lenses, mini sclerals and rgp’s, it became very clear that it wasn’t the lens initially, it’s me 😦

    My contact lens specialist told me he’s never seen eye’s reject lenses so much. my eye’s fill with mucus within about 30 mins and the eyelids become incredibly red and inflamed. He couldn’t believe i’d lasted 6 months with lenses before! It seems that my eyes rejected the lenses as foreign objects.

    Anyway. it’s been back to the corneal specialist for me, and he says there’s nothing else left to do, so i’m now booked in for a transplant in december.

    quite frankly, i’m terrified.

    has anyone else had a corneal graft? any stories or things you think i need to know? or ask?? I’m not a candidate for kerarings as my cornea’s are too thin/steep.

    thanks for listening, and all the best to everyone on their own journey with this disease.

    cheers – louise

  54. Louise says:

    ps – to sara, thanks for the link to kerataconus australia, interesting site!

  55. Jon Severs says:

    Hi Louise

    Thanks for putting your experience up here and sorry to hear it has been such a struggle for you. This guy got in touch with me a few years back and you may find his blog useful, he is in Holland http://www.julietmikebravo.nl/2009/08/corneal-transplant-experiences/

    Best of luck

    Jon

  56. Sara says:

    Matt – thanks for your kind words…think I may be heading back to see Ken in the UK soon. So much for a stable cornea!

    Louise – glad to share and all the best with the transplant. Hope that you can share your experience when you are ready.

  57. I was diagnosed last year at the age of 29, which is apparently quite late for it to emerge. So I have hope that it doesn’t ever hit full maturity…my optometrist thinks it should be manageable. I’m going to get fitted for my first contact lenses…RGP’s. We’ll see how they work. My prescription is not very strong (even now) and when I was in my teens I had 40/20 vision (the best my eye doctor said he’d seen in a long time).

    Thanks for chronicling your journey so far!

  58. Edwordz says:

    I had posted in may about having just had the intacs placed in my left eye. Well everything went south , I was never able to tolerate any rgp lens after that. I’m getting them removed tomorrow. Well a least I tried , I was still able to use an rgp lens before the surgery I was just trying to get ahead of the game. Now once they’re out I will hopefully still be able to wear a lense again. I been running on one engine For almost 5 months my right eye is my better eye and it’s done a good job keeping me going. My new OD fitted me with a larger diameter rgp lens but Im not liking how it feels, after I take it off ,I feel a mild soreness. I keep using my old one it’s smaller but it feels a lot better . What’s your opinion on the hybrid lens hard center with a soft skirt .. For now il just keep praying and being careful with my vision .. God bless u all .. 🙂

  59. Natasha says:

    Hi there,
    I have no idea who you are but you story has given me hope!
    I am 21 this year. 3 years ago i was dignosed with Keratoconus.
    At firat i was given hard contact lenses which i struggled to wear because they were so uncomfortable!!
    3 years later, i go for Cross Linking (a week and a day ago was when i had it done).
    I have a haze over my eyes if i dont put my steroid+ antibiotic drops inbut other than that its going ok.
    All the sites i find via Google tell me that after Cross Linking my vision will improve.. But still nothing as of yet- i sometimes feel i was better off before the operation!!
    This is where your story comes in, i now realise i have to be very patient and wait for my eyes to heal properly.
    In 4 weeks time i have to go back and have new hard contacts fitted.
    Thank you for sharing your amazing story!
    Much appreciated.
    Natasha.

  60. Jon Severs says:

    Hi Edwordz

    I found the hybrid useful to a point – the vision was good, I just had problems with the connection between hard and soft parts of the lens fragile and i would get a split in the lens quite often and have to replace

    Jon

  61. Sara says:

    Hi everyone, have realised that what I thought were bouts of conjunctivitis were really allergic reactions to whatever happens to be floating in the air Consequences of this do mean no RGP lenses until the redness and swelling dissipate. Am coping, but my query relates to anti-histamine use. I am using oral anti-histamines now, but would prefer to use something non-systemic. Does anyone have experience using anti-histamine eye drops with or without preservatives? Thanks very much, Sara

  62. Edwordz says:

    @Jon .., thanks for the info on the hybrids .. I ended up not taking my intacs out and trying another optician in Stanford ca .. Hopefully he finds a fit ..

  63. Dell says:

    I’d just like to say that this blog is VERY helpful. Thanks for all the information.

    Has anyone else thought that this condition could be related to looking at computer screens?

  64. Jono says:

    I was diagnosed with KC about a year ago, i work with VI athletes and at my worst i have just as bad eyesight as them 6/60. I compete in a high level of sport as well as being a self employed plumber. With the state of my eyesight, I no longer meet the driving standard and struggle to work. We’ve tried both hard and hard/soft lenses, initially they improved my eyesight to the required standard for driving, but within a few weeks my eyes get worse, not with clarity to a degree but the effects of any light stopping me seeing peoples faces or signs ect
    I’m really struggling to cope with the frustration of not having a consistant sight, i feel ‘part time sighted’. I did initially have the hope that i could qualify as a VI athlete to distract me from the negatives of the long wait to find a solution but with the whole corrective lenses side, i’m not sure i’m eligible.
    I just wanted to ask and say a few things to see if this is what others have experienced and/or can answer.
    On good days i think ‘what is all the fuss about’ on bad days i generally feel almost dependent, vulnerable and border line a danger to myself – i basically feel disabled.

    Jono

  65. Jon Severs says:

    There’s definitely bad days – when I was used RGPs quite often I would get frustrated: sport was impossible and even looking over a bridge would be a no go as the lens would flip out. I think it is about finding the best solution for you and staying positive. For me it is scleral lenses that have given me that, though I still have bad days and I have learned to accept them as part of life now. Others have found similar aid through other methods – transplants or different lens options. Stick with it and you’ll find your solution I am sure. Best of luck.

  66. Nicky says:

    Hi Louise from Adelaide.

    I’m also 37 and from Australia 🙂 I had a transplant 15 years ago and still have that cornea. This is despite a rejection episode the year after the transplant. We got onto it quick enough, so I’m very lucky it was saved.

    The transplant changed my world, being able to see was amazing (I hadn’t been able to wear contacts and ended up with hydrops too). I could read without straining and enjoy our beautiful outdoors.

    It is my transplant eye that does most of my seeing now, as my other eye has deteriorated a lot and I haven’t been able to wear contacts. I’ve only recently seen a new eye doctor who has recommended a contact lens specialist who, hopefully, will be able to help. Apparently my transplant eye has small cataracts as well, but not sure if that’s related to the surgery.

    Good luck with your transplant. Feel free to continue the conversation here if you’d like.

  67. Will says:

    Hi,

    I was diagnosed with KC in October 2011 and had corneal cross-linking in June 2012 in my right eye (epithelium off). The procedure was successful with no complications. My vision initially improved a great deal but now seems to be settling back to a state that is marginally better than before I had the procedure – I’m fine with this as CXL is not expected to improve vision. It’s now around 3 months since the surgery. I was just wondering if anyone had a similar experience where vision improved significantly after CXL in the first couple of months, then reverted back? I’m just trying to foresee the trajectory of my eyesight over the next few weeks and months.

    Would appreciate any thoughts.

    Will

  68. Nick Sharpe says:

    Thank you, it has been great to read your experience and every bodies comments about kc. I am 22 years old, I have been studying architecture for the last 4 years and have found it rather difficult at times, especially with light sensitivity. When deadlines are close I once had to endure a 56 hours straight marathon of work doped up upon caffeine and sugar, while enduring this condition. I have been fitted with glass permeable lenses, soft lenses, soft and hard lenses, although I find them no use at all. They only caused more problems for my eyes rendering me useless for days. so.. eventually when i finish 2 more years of studying i hope to go upon the transplanting list. It’s just… sometimes I have placed my eyes under so much stress they have been infected, and this worries me even more as this course is becoming more and more intense, I just hope they are able to hang in there. anyway, it’s nice to feel that i’m not alone, I can’t help feeling petrified of having surgery (never look up the operation upon the net, biggest mistake)…

  69. […] 6.My Experience « Keratoconus Info Fortunately, it is also one of the leading eye hospitals in the world. I have had good experiences and I have had very, very bad experiences at Moorfields. The skill of the doctors is ….. So glad to read all your comments & good luck to all of you. https://keratoconusinfo.wordpress.com/my-experience/ […]

  70. Dave P says:

    I have had Kerataconus since about 24 onwards (i’m 29 now). I have progressed from glasses straight to hard RGP lenses – They skipped the soft contact debacle with me.
    And in the last few weeks ivemoved from the RGP to trying the Kerasoft IC lenses (totally useless), to the So2Clear Corneo Scleral Lens – Vast improvement in comfort and doesnt like to catapult itself out of my eye at innopportune times.

    First time ive seen this blog site and i must say its amazing to read and very informative.

  71. Olwen kenni says:

    Hi my name is Olwen Kenni,I have been diagnosed with KC at the age of 21. I remember it like yesterday. Ever since I have been wearing the hard contact lens, which are extremely painful. Doctors try to do the cross linking but my KC are in the advance stages,so it could not be done because my corneas are so thin. I have been on the waiting list for corneas over three years now. The problem in South Africa is that people don’t donate their organs,which means people don’t have the gift of sight. After reading everyone’s comments I realised I’m not alone in this world. I have experienced most of the things mentioned. I managed to get my drivers but afraid of loosing it due to my eye sight-this is the one thing that makes me independent. I pray for patience,tolerance,the ability to see another day. Hopefully one day ill get corneas and have the ability to see properly. All the best to each one of you&thank you for sharing your experience. (Olwen Kenni age 27 South Africa)

  72. Janet Sternfels says:

    Hi. I live in the US in New Jersey. Over a year ago my son who was then 25 had a corneal hydrops which resulted in the only option of a cornea transplant. It has been a very long year for a 25 year old who can not drive and has a lot of light sensitivity and has of yet not been able to be fitted for contact lenses due to a set back with infection in the transplant eye. He also had Cross Linking done in the other eye. 2 weeks ago, my older son, 27 went for an eye exam and found out he also had advanced KC in both eyes. As a result my other son, 22 years old was examined and yes he has it too. I did not know that this is genetic. Yes, all 3 of my sons in their 20’s have it. Both of the recently diagnosed sons had Cross Linking done this week and are struggling. I thank you for the website and information. This is also very painful for a mother to see all of her sons go through this disease. I agree, no one understands the journey unless you have been there.

  73. Jon Severs says:

    Hi Janet

    That is really surprising that all three have it, this seems like something the research team at Moorfields, London, which is doing research into the condition and a possible genetic link, would love to hear about. I will try and find the details of the lead researcher.

    I wish your sons all the best and hope they find a point where the condition settles into a manageable state,

    All the best

    Jon

  74. Joe says:

    Will,

    I had CXL epi-off about 5 months ago. My vision improved a lot initially, but now it feels like its worse than before the procedure – particularly when looking at near objects I.e. reading. Things are particularly bad in lower light. I see my doc in January for my 6 month checkup. I’m worried the KC is progressing

  75. Paul K says:

    Paul K,
    I have had KC for the last 17 years. I was diagnosed with the condition when I was 23 years.
    This came to me a shock and relief at the same time as I knew what the problem was and with the help of gas permeable lenses I could now see properly for the first time.
    I sympathise with all the KC suffers but I encourage you to preserve and be strong. Luckily for me the KC is stable and I have found the right contacts lenses. The Rose K work quite well as I am allergic to the other materials. Hope this helps

  76. lucielebrun3 says:

    Thank-you for your story. My name is Lucie and I am 16. I have had a high mixed astigmatism for my whole life, and I’m a little worried I could have keratoconus. I never noticed a major problem with my correction provided by glasses until I started wearing soft contacts at age 13. Then, I started to notice shadowing and ghost images. I stopped wearing glasses and only wore soft contacts for the next 3 years. I developed conjunctivitis shortly after, but got diagnosed with it a few months ago. It got so bad that I could no longer comfortably wear my soft lenses. I tried RGP lenses, but I hated them. They moved around all the time, they were always popping out, they were always hazy, and my vision with them could not be fully corrected. So I decided to persevere with my soft lenses, even though they are always off axis, they are uncomfortable, and they are often hazy. I went to see my eye doctor a few months ago, and he said that the conjunctivitis would only get worse. He said I should lay off the contacts, so I decided to give glasses another try. My prescription had changed since the summer, which I found a little strange, so I asked him if he thought I had keratoconus. He said no, but didn’t explain why. I got my new glasses two days ago, and my vision with them is less than tolerable. My right eye has been twitching for the past month, and nobody understands how frustrating it is to have my eyes and go about living a normal life. I’m sure you all can relate. I know what it’s like when nothing works. I don’t know what to do from here. Your story really touched me. I hope you find something that works.

  77. Jon Severs says:

    Hi Lucie

    Sounds like you have had a tough ride – are you based in the UK?

    My advice would be to firstly get a second opinion and secondly to really insist someone explains the issues fully with you – the conjunctivitis comment especially needs more explanation to you. Don’t be afraid to push them and make them talk to you in an intelligent way.

  78. lucielebrun3 says:

    Thank-you for your advice. I am from Canada by the way. I went to an ophthalmologist two years ago, when my vision problems first started to really annoy me, but he said everything was fine, again not giving me much detail. He said the shadowing and poor night vision with the glasses was just a result of my high astigmatism, and nothing could be done to correct it. He did not mention keratoconus. I would like to go back, perhaps to a different ophthalmologist, to get yet another opinion, but my parents do not think it’s worth it, seeing as my eye doctor is probably right. It probably is just the astigmatism causing the problems, and the conjunctivitis is probably just a coincidence, although I’d really like to be sure, because I spend my whole life being worried, and better safe than sorry.

  79. Jon Severs says:

    It’s a tough thing to deal with – keep positive though and be persistent. I went through a few doctors and some were better than others. You want one you can trust and who treats you with enough respect to explain things fully. It’s hard but if you feel you aren’t getting the treatment then book yourself in somewhere else. Not sure how it works in Csnada or who you are seeing currently but seeing a consultant in hospital you often get the best answers so push for that if you haven’t yet.

    I wish you all the best!

  80. CHARLIE says:

    Just wanted to thank you for this fantastic article. I’m an optometrist and it’s been unbelievably helpful to read through your experiences in terms of my own learning about keratoconus and my ability to advise future patients. Just one little comment, I’m guessing you’re aware of the research that suggests rubbing your eyes makes keratoconus more progressive. Do you think the hayfever (itching)and sleeping on your front (with your eyes rubbing the pillow) may have made your KC progress more? Many thanks again! So well written. Charlie.

  81. Jon Severs says:

    Hi Charlie

    Thanks for your kind words.

    Yeah I think the hayfever and sleeping on my front has probably played a large part in accelerating the condition. It’s a something I have tried to combat but the hayfever meds I don’t like being on all the time. Also I find with sclerals that at the end of the day when I take them out I get this rush of allergy into my eyes – not sure what this is from! I assume the scleral has acted as a barrier throughout the day and when I take them out I move all that was on the barrier into the eye. Then the urge to itch arises!

  82. CHARLIE says:

    One other question, I’m assuming that treatment such as collagen cross linking etc will not be done on the NHS anywhere in the country?

  83. Jon Severs says:

    Not sure on that one – I was too far gone when that came out properly!

  84. louise says:

    Hello, Louise from Adelaide here.

    I first wrote earlier in the year when i was researching KC. My right eye had gotton so bad that glasses couldn’t help anymore, and I was searching for info about intacs and anyone who might do them in Adelaide Australia.

    I had trialled rgp lenses, scleral lenses and mini scleral lenses to no avail – my eye rejected them and they caused a lot of pain.

    After extensive research and consultation with a lovely corneal specialist called richard mills,we decided to go ahead with a graft on my right eye.

    So here I am, the day after my surgery, writing this as i look (very blurrily) through someone elses cornea. I’m in quite a bit of discomfort – if feels like gravel is in my eye and i’m quite photosensitive. but am hoping that as the healing improves so will my vision.

    I’ll keep you all posted.

    Louise – Adelaide

  85. Rebecca from Adelside says:

    This is such a fantastic site! I noticed also a few Adelaide, South Australia people on here- which is where I am:) I have had kc since 20yrs. I am now 41 and going through a difficult stage. At 30 I had hydrops in my left eye. Was not too painful and healed ok in about 4 months. Two weeks ago I woke up with hydrops in my right eye!! Oh joy. On going to my eye doc I found out right eye doubled in steepness so is even with the left(which was the worse). This week I have a new lens in my left eye -a Clearkone which so far is great in comfort and vision. My hydrops eye is absolutely killing me. It is super hot in Australia at the moment and the light outside is awful!!! Does this light issue change as the hydrops heal?? I thought my sunnies were good but not so sure now. I just drive with my hydrops eye shut!
    Next step once the hydrops are healed we may look at a graft. 😦 some days do hard and after 20 years with KC I feel I am not coping as well as I have.

  86. louise says:

    Hi Rebecca –

    You poor thing – I’m so sorry to hear about your hydrops – i’ve been lucky not to have that. Can I ask who your doc is?? I’ve been seeing Dr Richard Mills who is AMAZING. He has been nothing short of excellent. Also Gavin and David from Optomertry on Osmond are very experienced in fitting lenses for KC. They very patiently let me come in every Friday for 6 weeks to try different lenses (scleral & RGP) before realising it wasn’t going to work.

    It’s nice to have a local connection 🙂 let me know if you need anything. Or just a good solid whinge! I am 37 so we are close in age. I thought our KC was meant to have settled by now? Mine was stable all through my 20’s, and then as soon as I hit my early 30’s – whammo! been a downhill slide ever since.

    Louise, Adelaide

  87. Nicky says:

    Sorry to hear about your pain and the challenges you are facing. I hope you have some good support to help you get through this period of feeling you’re not coping as well as you have in the past. I’m glad this website can offer some of that.

    Re the hydrops, yes, for me the light thing improved as they healed. I had hydrops when I was about 22 and my eye was so painful and streamed at any light …I ended up wearing an eye patch (not the medical ones, a pirate one… “ahoy me hearties”!!). Knew my boyfriend at the time (now husband) was a keeper when he wore an eye patch to a party as well, so I wasn’t the sole pirate!

  88. louise says:

    OH MY GOODNESS i just wrote that long email with out giving an update on my Corneal Transplant last week….

    So. since I wrote the day after, in a lot of pain (and completely medicated up) things have gone from strength to strength. The first 5 days were the absolute pits. Light was light lasers that burned through me, i was so photosensitive. I tired easily, slept all the time, couldn’t handle looking at anything for too long, coulnd’t have the lights on in my bedroom etc etc.

    11 days later at my check up with my corneal specialist I have been given the go ahead to drive again (watch out!!!!!) and MY EYE CAN SEE OVER TWICE AS GOOD AS IT COULD BEFORE THE OP!! and that’s with it still being not healed!

    Instead of 20/20 in Aus they use “6/6” (metres instead of feet) apparently? (i didn’t know that til the opthal told me) so just before the op i was 6/120 (so someone with ‘normal’ vision could see somehting from 120m away that I would have to be 6m away from) and today i tested at 6/48!!!!!!!!!!!!!! I got down to the 3rd row on the chart without the pinhole thing!! (i haven’t been able to even identify where the chart was on the wall before the op 🙂 )

    So even though i’m still photosensitive, still in a bit of pain, and still tiring relatively easily, I can see more then I have in years on my right side… whin my husband stands close to me I can almost see his eye’s are green 😉 that is such a nice feeling.

    I’m just praying that my eyesight will end up good enough to be corrected by glasses again as I cant wear contacts. Imagine seeing out of both eyes again!!!!

    xxx much love and merry christmas

    Louise 🙂 Adelaide.

    ps. If I hadn’t found this website in January or so this year – I would never started researching as much as I did and finding such a great corneal specialist. This site has been the inspiration for it all – thank you so much.

  89. Nicky says:

    Wow, Louise, that is soooo brilliant! Amazing.

    Love and merry Christmas to you too!

    Nicky

  90. Jon Severs says:

    What a great set of posts!

    Rebecca – yep the light sensitiveness got better for me too over time. What’s interesting is how they have progressed since – left eye hydrops resolved seeing much better in bright light; right eye hydrops resolved seeing much better in dimmer light. Random!

    I used to make an eye patch by sellotaping card to the inside of my sunglasses lens. Used to work on the computer with my sunglasses on! I found the hydrops resolved not gradually but in leaps every few months.

    Louise – that is such great news! So pleased it is going well – in time for Christmas too! And it’s great the website has been useful for you. Keep us updated : )

  91. Rebecca in Adelaide says:

    Louise-wow that is amazing news re your graft and eye sight! is that sight without a lens??i am trying to see Richard Mills as I think I need another opinion … I like where I go now (Adelaide eye care on Goodwood rd) they specialises in K but I have just had do many problems:( I think I need more advice. I am in so much pain with my hydrops. I called them today to see if there were any drops and they did not seem interested to help. I know it is Christmas Eve but……..
    I am from Adelaide but lived in melbourne for a long time so I had a great Opth there. I am defiantly going to try and see Richard Mills. Can I ask where you had your graft? And was it private or public? So nice to have a fellow Adelaide person on here! I am in the Adelaide Hills (Belair).

    Merry Christmas everyone!

  92. nayebale rachel says:

    i was diagnosed wit keratconus whn i was 16 am 19 now but ts a hell ov an experience 4 me.iv used soft contacts then da rgp then eventually forced ma optician(who is really patient wit me n i jst luv him ,tho am scared hes gettin really old)to prescribe glasses 4 me,they r really thick n they correct abit ov ma eyesight,i cldnt bear da lenses ,i hv allergies wic means a lot ov infections 4 me meaning da clinic is ma second home now.i see by sense ov touch n faith too.ts really hard 4 me coz am in uganda n not so many pipo kno abt ma condition so am vry desperate.
    nick sharpe i luv ur blog cz i wanted to do architect too n devin bragg i feel ur pain.God bless u all.

  93. nayebale rachel says:

    i lov this site

  94. Penelope says:

    Hi there,
    thank you so much for sharing your experience. My name is Penelope and I’m 50 years old, and I’ve had KC since my mid twenties. I am wearing RGP at the moment however due to the strain that they cause on my eyes, my ophthalmologist has been trying to fit me with soft lenses for evening and weekends. Even though these lenses are comfortable the level of vision they give me is very poor so i am reluctant to wear them.
    Recently my eyes have been very strained and uncomfortable, the ophthalmologist told me that i had dry eye (which I have been told on many occasions and could not understand as my eyes weep constantly, on this occasion i asked for this to be explained to me i was told that my eyeball has patches of dryness on it-hence the weeping.) Sometimes i feel we are supposed to know what these terms mean and feel embarrassed to ask, i have never felt that my condition has ever been fully explained to me. At the moment i am existing in a blurred world, i cannot drive, i cannot watch TV, i cannot read, i cannot use the computer (my 14 year old daughter is typing this for me). Yesterday i wandered into town and wondered if i should have a white stick for my protection and to let people know that i cannot see properly! The enormity of this condition has just hit me, i really appreciate the great vision my RGP’s give me, especially now as i find myself so debilitated.
    During the day i try and make a huge effort not to rub my eyes, however, sometimes it happens without even realising and its only when i try and stop that i realise I’m rubbing eyes. In the mornings, when i waken up, my eyes are cemented together, i know i have been rubbing them in my sleep even thought I’ve slept on my tummy with my face in the pillow to avoid rubbing. At the moment I’m using ‘Hylo-Tear’ six times a day and ‘Hylo-Forte’ at night.

    Take care
    Penelope

  95. Nicky says:

    Hi Penelope, I am so sorry to hear you’re going through this. Yes, finding the right eye specialists is so important.

    I have had a corneal transplant in my left eye and began to think I needed one in my right eye. Like you, I could not tolerate the RGP lens in my non-transplant eye. It got to the stage where it would fall out or get dust behind it so it was painful. I put off finding a new specialist because I figured they couldn’t do anything (and wanted to avoid a transplant).

    Eventually I did make an appointment and am rapt to have been introduced to hybrid lenses. Have you heard of them? I think the company is SynergEyes and the specialist KC lens is ClearKone. Basically it has a hard lens in the centre, which gives the vision, and a soft lens “skirt” which keeps of on and more comfortable. The difference in eyesight is incredible! I’m still trialling them for the right fit (I can’t wear them for very long), but am confident it will get there! I hope you are able to find someone who can help fit you. It has made a world of difference to me.

    To your 14 year old daughter – thank you for helping your Mum with this. The support of loved ones really makes a difference.

    Take care,

    Nicky

  96. nayebale rachel says:

    hullo iv been doing ma research n i found a doc boxer wachler wbho practises in the us.does a procedure called da c3-r holcomb.n from all da patients who had t hv got perfect sight iincluding an olypic bobsledder calld steve holcomb.goggle for more info.i hvnt had t coz i cnt afford t but if u cn try t out.he also hs a newsletter dat u cld sign up for

  97. Janet says:

    Penelope, I’m so sorry to hear your problems. My daughter has KC, and a few months after corneal cross linking, she started having the extreme tearing of the eyes that you describe. It is, indeed, from dry eyes; her eyes were just overreacting to the dryness. Her doctor put in lacrimal plugs, which are just tiny plugs that were placed in a tear duct in each eye. That kept more moisture on her eye, and her problem immediately stopped, and that was 3 years ago. Of course, I have no idea if the plugs would work for you, but perhaps it’s worth discussing with your doctor. It took my daughter’s doctor about 5 minutes to insert them, and my daughter doesn’t even notice they are there – no discomfort and you can’t see them. Feel free to email me if you need a friend. I don’t have KC, but I’m your age and have done lots of reading on KC in support of my daughter. I’ll pray for you. Janet cline2j2k@comcast.net

  98. Penelope says:

    hey Janet and Nicky,
    thank you so much for your kind words, they tear duct plug sounds good but i’ve never been offered this. Are you both in the states? as i am in the UK and sometimes think that treatments available may differ but i will definitely ask my doctor about this on monday. As the constant weeping irritates the skin around my eyes, which is very painful as i have very sensitive skin due to allergies and eczema. I am grateful for your prayers, kind thoughts and advice.
    Take Care
    Penelope 🙂

  99. Janet says:

    here’s one site that explains the plugs. http://www.allaboutvision.com/conditions/punctal-plugs.htm. Best wishes.

  100. rachel says:

    hullo penelope am so sorry abt wat ur going thru,i also hv allergies n so ma skin is really not good,i hv allergies in da eyes too.
    iv been reading abt this doctor called dr.boxer wachler who does a lrocedure called c3-r holcomb dat helps stop kc from degeneratioon.i wld encourage u to check t out on da web(oh,ur daughter shd govgle his name n ull see da pipo he has waked on n they all hv perfect sight .t takes 9 mins n u get perfect vision immediatly isnt dat amazing?)
    i hvnt had t coz ts vry expensive for me.try t out.best wishes rachel,uganda

  101. Michelle says:

    Hi I am 16 years old and I have just been diagnosed. My right eye is WORSE than my left I read your story. To be honest I am scared. I am scared of my eye sight getting worse and not being independent. I just heard about a this study they are doing in Emory University helping people with keratoconus could you tell me your opinion about this please it would mean so much http://www.eyecenter.emory.edu/press_releases/pr_cornea_12.htm

  102. louise says:

    Hi Michelle –
    I know you must be feeling scared right now, i know I was when I was diagnosed at around your age!

    there are lots of things you can do to help keratoconus now though, so the outlook may not be that dire for you 🙂

    the study you linked to was done in 2008, a long time ago in research years now! Though I have not had cross-linking done, (my eye’s were too bad for it to do much to help by the time it came here to australia) from what I understand it’s good to have done in the early stages (like yours) and it stabilises the cornea so it doesn’t get any worse (it doesn’t make it any better if you’re already bad) So it could be a great option for you if your opthalmologist agrees.

    If it’s not the best option for you, there are lots of different contact lenses to try – personally I’ve always had to wear glasses for mine as i can’t wear the lenses, and that hasn’t been too bad! I even had a corneal transplant about 3 months ago, and even that has been so quick healing, and much better vision!

    stay strong, and stay positive, for goodness sake DON”T rub your eye’s as itchy as they many get, and find an eye doctor that you trust 🙂

    good luck,

    Louise

  103. George says:

    This is really close to my heart becoz i know how keratoconus changed my life….
    i was diagnozed with Keratoconus in nov 2009…i had initially droped in for a new glass prescription but got the shock of my life when the doc told me all about keratconus….
    he imidiately prescribed me a pentacam test and a coule of other tests and confirmed my fears…
    But he reassured me of succesful treatments…still i i referred to check in with another leading eye specialist in our city..who too confirmed it…
    so i went back to the first Doctor and he took all the time to explain to me very clearly the desease and what my options were , sometimes using a pen and paper to make it diagramatically more clear .
    I dint waste any time on getting a C3R i.e corneal crosslinking done on my eye ..epithal off…using riboflavin and UV to thicken the cornea….
    there was initially a haze in the eye for about 2 weeks but it cleared soon enough….
    i briefly used soft toric lenses but dissatisfied i moved on to Rose K lenses which were to say the least – a revelation for me, vision improved dramatically but ofcourse rose k lenses being hard do give me a hard time but i’ll bear with it…
    in all my follow-up and numerous tests later in the last 3 year keratocous hasnt progressed…C3R has mostly proved successful in almost all patients BUT dont expect vision to improve, but only marginally .
    th main purpose of C3R is to ARREST the develoement of keratoconus so dont be mistaken for it to be an actual cure.
    nevertheless in the long run, you will be thankful to whoever invented this techique as the desease most likely wont progress any further .
    I strongly recommend C3R , particularily if ur in the early stages of keratoconus coupled with using rose k lenses on a daily basis…

    my vision otherwise is that i can distinctly see 2 images of the same object with my affected eye when i am not using the lenses…

    everyone , plz keep us updated !

  104. Ece says:

    Hi,
    Thanks for sharing your experiences with us. I’ve been diagnosed with PMD when I was 29 years old on April 2012 and living with it since then. I’ve had C3R on my bad right eye the same month. Some other doctors suggested kerraring intacts in my cornea but my personal ophthalmologist decided that since i’m able to wear soft-contacts, there is no need for any surgery. C3R is not considered a surgery ; it only takes 1 hour, you are completely awake and doctors only put some drops on your eye. Now we are only trying soft lenses for my eye since my sight is around 7-8/10 but it gets any worse im planning to use rigid lenses. We are not rushing into anything till my next appointment which is next month. Your site really enlightened me for my choices and which stages i might encounter so I’d be very grateful if you update it after your appointments or troubles you get with KC.

  105. Lucille says:

    Hi guys my name is Lucille and I hail from sunny South Africa @ 16 I was diagnosed with very progressive Keratoconus. My only solution was a transplant and I was immediately placed on the waiting list [I didn’t realise that there was a problem at all I thought everyone else saw the same as me] nevertheless a few months later a donor was found and I was scheduled to have the surgery. There was very little discomfort after I came out of surgery and could actually go home the same day. Side effects? very very sensitive to light. Little did I know that a week after the surgery my body started reacting to the tissue/organ and i found out very late that a rejection was occurring a few weeks after I was sent to hospital for regular “cortisone” injections to “confuse” my bodys reaction to the tissue/organ. doc reckons that it was a miracle that he could save the cornea – it was touch and go there for a second.

    I was told that the stitches I had on my eye would dissolve – not always the case. There were a few times i would be doing something and it would suddenly feel like a huge splinter in my eye – that’s the stitches breaking loose and sticking me in my eyelid – very uncomfortable but not painful. I cannot begin to explain to anyone what the corneal transplant did for me. I could actually see that trees had individual leaves, could cross the street without hearing first if cars/vehicles were approaching and the best was seeing my dads face for the first time i could actual SEE the lines of wrinkles on his face.

    Two years later I had the second eye transplanted on. A lot less sensitivity now but still had problems with the stitches pulling loose. Four years after the transplants I noticed a clouding of my vision only to realise that capillaries were growing into the tissue bringing with them our bodys protectors [white blood cells] and the rejections started all over again, this time no injections just tablets and careful monitoring of the organ.

    I then developed a very high astigmatism in both eyes and had various lenses fitted – piggy back method [didnt work popped out and starved the cornea of oxygen] hard lenses didnt work either too painful too wear.

    I have recently found out that the tissue/organ in my left eye is “slipping” and have been advised to go back onto the waiting list for another transplant whilst the very high degree of astigmatism in my left eye has left me with the alternative of a sclera lense. Would I do this all over again! Absolutely! The only difference i would have made, is to make the South African public aware that corneas can be donated. You see many SA citizens don’t know this and having said such our eye banks are very low, and the list quite long.

    Obvioulsy got loads to tell you guys and its great that there is a forum like this where we can chat to each other Will keep you guys in the loop

  106. Eddie says:

    Keep strong you been thru a lot . This is hard to deal with. Im still able to tolerate hard lenses . I hope I can hang on to them as long as I can .

  107. Shardul singh says:

    hi
    first of all I am both happy and sad to know that there are other people having a same defect as mine
    I was diagnosed of keratoconus a year back in both my eyes.my left eye was pretty bad at that time and was told to do C3R in my left eye. after the C3R i immediately got hydrops in a months time and the vision was very blur. i presently living with just one eye’s vision.just before 3 months i was asked to do C3R for my right eye too, but i was avoiding it as much as i could. but few docs said me that if i avoid C3R the thickness of my cornea would be below safe limit and after that only option would be to transplant it.so i did C3R in my right eye too just 3 months before.During this time i also underwent a minor surgery in my left eye(in which a gas bubble was injected and sutures were put ) after which hydrops were gone leaving behind scar in my left eye while the vision remaining same(blur).But after C3R in right eye i directly got scar at smaller portion presently. i have even ordered SCLERAL lens for both eyes.
    after i went through your case, i am also thinking of avoiding cornea transplantation and waiting for cornea to heal by itself.

    i am 19 year old presently.and i am worried because every thing from initial stage to hydrop to scar within 3-4 months.
    ADVICE ME PLEASE

  108. Jonathan Drane says:

    Hi,
    I wanted to ask people’s experience/symptoms with KC, I have been fitted with two types of contacts and still yet to have success. whilst clarity is increased with the lenses other visual issues occur causing a more serious problem of light streaking which essentially creates ‘blind spots’.
    Whilst this so far has stopped me from having contacts and resulting on my visual acuity remaining poor, I still prefer my quality of sight without contacts even tho on paper it’s worse.
    Over the last 6 months I have noticed I’m becoming more light sensitive and now that the summer is coming resulting in more strenuous light my eyes aren’t coping. I’ve always struggled with lights sources in rooms causing a light mist and poor vision – also affecting depth Pereseption (not knowing if the light source is in front or behind a person/object).
    I’m begining to notice that I’m habitually putting my hand flat above my eyes (like a sailor looking out at see) to shut out ceiling light ect.
    Are these issues common among KC? I’m dependant on polorized sunglasses outside and rapidly becoming aware I need to wear them indoors.
    According to my results over typography scan ect (7months ago) I only have moderate KC. I’m currently awaiting the results from physiological tests – has any body else had these?
    Was there anything shown in the results that is caused by KC?
    Whilst having mine tests the technician pointed out I had irregular readings in the tests which show Optic nerve function but then said it might be because I can’t see the tv screen
    that well….

    Please share your thoughts

  109. Jon Severs says:

    The light issues I have too but not as bad – I believe they are quite common. Polarised sunglasses used to be my saviour but my eyes are constantly changing and I now differentiate between ‘clean’ light and ‘ambient’ light. Basically on a clear blue funny day my eyes are great just with the lenses. On a day that is clouded over with white clouds or hazy my vision is poorest. Sun glasses do not help.

    I would say if you are having the level of issues you are having then there may be an issue with your lens fit – I had similar issues and tweaking of the power/fit/tweak of the lens fixed it but it took a lot if time.

  110. George P. says:

    Hi Jon et all,

    Living with keratoconus for nearly 13 years now and more or less I ‘m in the same boat with Penelope above for almost a year (eyelid eczema and around which lead to MGD and aqueous deficiency). I ‘ve reached to the point that I could not where my piggy back system at all! I ‘m on a sick leave for 2 months now and nearly away from any day-to-day activity 😦 Fortunate enough that I can do some shopping in the super market and some cooking. I ‘ve also started doing some jogging in the nearby park or else I would be going nuts all the time inside the flat! I had to quit cycling as well way before my sick leave started since the cold wind was affecting the dry eye condition (damn it I gained weight as well) 😦 It ‘s only recently that I started wearing my lenses again, but still with some discomfort. Long story short, I took matters in my own hands (I gave up with the local hospital), did some proper research, contacted my former optometrist in Edinburgh too (now I live in Kent) and ended at Dr. David O’ Brart for my dry eye condition and Ken Pullum.for scleral lenses. I had the appointment with Ken today in Hertford (couldn’t afford waiting another 2+ months for reaching him in Moorfields) and it looks like that I ‘ll be getting back to my normal life very soon!! Joining the scleral lenses club 🙂 Penelope since you are in the UK definitely check Ken Pullum. There are other specialists for sclerals around the country, but Ken is THE expert in UK (and not only).

    Hey Jon,

    How come and you didn’t have the Crosslinking operation? I did that 5 years ago back home with Prof. Kanellopoulos. His method is now standardised under the name of Athens protocol. My keratoconus seems to be stable after having the treatment 😉

    George

  111. Jon Severs says:

    He George

    Great news you found Ken!

    I could not have cross linking when it emerged as my eyes were already too far gone unfortunately.

  112. George P. says:

    Oh! 😦

    Yes, it’s great that I reached Ken! He is indeed a fantastic guy. First really positive feeling I had after many many months 🙂 I know that my dry eye condition needs so much time to cure. At least it got better after the treatment suggested by Dr. O’ Brart (apparently I ‘m already doing hot compresses, lid hygiene, etc and all the usual stuff for MGD, I believe his suggestions made some good difference though). But getting back to normal life with sclerals is obviously a vast improvement. I ‘ll provide an update after I get them next week and start using them for good 😉

    George

  113. Slondiwe says:

    Nice one. Reading ur comments just made me feel better. I also found out today that I have kc problem and I still don’t know what 2 think or do but now I’m feeling better…. I’m from south africa… I’m 21 years old and the doctor sugested that I should try contact lenses, he said they will help me. Hope this whole thing will work out good and I’ll be able 2 live my normal life…. Wish u all the best. Together we stand, devided we fall… Peace!!!

  114. Carol says:

    Nice article,enjoyed reading it… I have KC for the last 15 years in both eyes… Had corneal transplants in both eyes… Now I wear a hybrid lens in my right eye. The left eye is so irregular that lenses are hard to fit. I am currently being very very sensitive to sunlight, making it so difficult for me to drive… Have lots of infections in my eyes, due to the lenses… Well, I live day by day, hoping that the lens will still give me the desired effects for all my life…. Without them, I see nothing but blurred vision….

  115. Jules says:

    Hi I’ve been a patient at Moorfields since 1987. You’ve had many similar experiences to me! Good and bad. Appalling service at times but with some fantastic doctors there! Thank goodness!

    I’ve had the graft! Fantastic. Can see with no correction with that eye! Now looking at the collagen cross linking cr3 which I’ve just been told about! USA bobsleigh gold medalist had it 2010.

  116. Allie jones says:

    I have had a sclerol lens for 2 months now, and life has improved – no one understands how debilitating one contact lens and one badly distorted eye is!!! I have settled down with my ‘goldfish bowl’ well and im even considering a sclerol lens for my other unaffected eye, (just to lose the mad eye moody look!) but have recently started getting bad misting/fogging. Any ideas?
    Allie

  117. Jon Severs says:

    Hi Allie – sounds like it is not quite fitting or you need to bathe it with a protein remover. I put mine in a holder full of saline and an Amiclair tablet every week. You can get protein remover for lenses from any chemist.

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  119. Jonathan Drane says:

    Treating the person and not just the eyes.

    Since my lack of success with contact lenses, I’ve tried a new approach. My new mind set of ‘treating the person’ has evolved from numerous conversations with people of all eye disorders and they’re coping strategies which aren’t necessarily linked to direct eye treatment.

    Sunglasses
    The eye fatigues like any muscle, so I’ve limited the amount of time I look at a tv/computer screen – I also try to wear sunglasses (polarised) whenever practical even when resting.
    Whilst I understand I look like a twit wearing SG’s indoors – my eyesight lasts longer and more consistently thru the day.
    SG’s also provide a screen for my eyes to rest in high light conditions also limiting the amount of glare received from awkward angles, after all there is logic within this. We suffer from a fault in refraction, light being scattered incorrectly to the back of our eyes. Polarised glasses reduce the light waves limiting scatter. (My understanding)

    Diet.
    The importance of a balanced diet is crucial, being a sportsman I know that if I don’t fuel myself with the correct food my athletic performance is greatly reduced. This is also the case with your eyes, imagine how your body feels post sugar highs ect, tired and laphargic this is exactly what happens to your eyes.

    Anxiety.
    The number one factor of improvement to my sight is anxiety managment. This has come with understanding the concept ‘ treat the person ‘. Anxiety affects the eyes and can spiral out of control together. If my eyesight is worse, I feel anxious, if I feel anxious my eyesight gets worse. But by understanding that these factors amount to reduced eyesight during the day and rationalising them it’ll go along way to reducing your eyes to fatigue through anxiety.

    My eyes are really bad today :
    I’ve been watching TV a lot
    Sitting in a brightly lit room
    Unfamiliar territory.
    Meetings ect…..

    ‘Of course they’re going to be worse, it’s been a demanding day on them’

    The amount of times I’ve phoned home In tears because my eyesight has gotten so bad I’m in pain is crazy, but since rationalising what is making them tired and not jumping to the conclusion that they’re getting worse – I have started to achieve a more consistent eyesight. Consistant eyesight is a lot less debilitating than a fluctuating one, I know what cards I have been dealt to play with. (I hope the card analogy makes sense).

    Go well

    Jono

  120. Steven says:

    Similar story , reached 40 years old , however still managing with gp lenses . However signs of scarring is emerging

  121. Maneesha says:

    Hi 🙂
    Im 14 and i was diagnosed with Keratoconus a few weeks ago. Everything is blurred through my right eye and my right eye is slowly progressing.
    Thank you for giving me an insight of the experiences you have been through.

  122. Olwen kenni says:

    Hi everyone, I cross linking done in my left eye three weeks ago. after a week my doctor advised me it’s safe to wear my hard lens,however my eye has been painful and swollen. Is this normal? I can’t wear a lens on my right eye due to it being way to steep. basically my left eye is my only sight.I took the liberty to use my vacation leave and rest my left eye. Any advice is welcome. thanks Olwen- South Africa.

  123. Lindsay says:

    Thankyou! I was beginning to think that only people in the US are going through Keratoconus at times!

    I discovered I had KC about 12 years ago whilst at Uni. My local optician was next to useless but did forward me onto the local Hospital for further checks. They were appaling to say the least and when they couldn’t get a lens to fit, they just said i would have to make do with glasses then… hmmm.. helpful!

    I have now moved to Manchester Eye Hospital and have had mixed feelings. I too never get to see the same person twice and in 7 years seen a consultant twice who said I was too young for a transplant. I am 33, and didnt think age came into it.
    I have a huge problem that they start by putting iodine drops into my eyes to check the fit, shine lights into my eyes (i have extreme light sensitivity) and THEN ask me to read a snellen chart, which i can never see due to tearing and blinking so much.

    I have had rgp lenses for over 5 years now, larger one in my right and about 4 presciption changes. My vision has great days and appalling days. I feel sometimes like the world has too much going on it when travelling, eyes watering or sore, nose running and lights flashing by. It is like sensory overload.

    Has anyone got any experiences of Manchester and how best to approach them? I really want to get a new diagnosis on my right eye as they are on fit 4 of three types of lens and now say that is the best they can do…

  124. Jon Severs says:

    For me it’s hayfever causing havoc currently!

    It sounds like you have had a very bad course of treatment – you might want to consider getting a referral to Moorfields somehow – I know they take people from all over the country.

    As for the right age for a transplant – I haven’t heard that people are too young before! I have heard though that the older you get the less chance if rejection of the donor cornea…

  125. Lindsay Bradshaw says:

    Thanks for the reply and completely agree about hayfever!
    What a difference a week makes, I discovered your site whilst doing some research on my eye and following a hasty visit to Manchester Eye A&E I’ve been diagnosed with Hydrops in my right eye! It is not too painful just really uncomfortable and extremely light sensitive. I think hydrops plus hayfever and hot weather is a nightmare combination to which I know not a cure.
    Off back to see Dr Brahma next week for a follow up consultation app but not sure what to expect.

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  127. Zinhle Mkhize says:

    My Boyfriend of 3 years has had troubles with his eyes as early as 13 years. It could have been before that but he never took notice of it. He’s now 21 and a 1st year student in tertiary level. With so much going on in his life, he just found out yesterday from a series of tests conducted by doctors in South Africa that he has to wear Scleral lenses with specs on top of that. He’s quotation for treatment and lenses all billed up to R9016-00…Born being a premature child, doctors expect the condition to grow worse.. Reading this experience has however made him view many of the options he has but can only hope the condition becomes better then deteriorating..

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  129. Sue says:

    Thanks for your story. Im 44 years old and have had the condition for about 8 years.
    Its good to hear someone elses story and know that others are suffering as well. Its a terrible and frustrating eye condition not to mention expensive having to buy lenses and glasses. I have had glasses and now for 2 years have worn rigid lenses. I cannot wear one in my right eye any more as it iritates it This is my worst eye which is legally blind. My left eye has keratoconus but is a lot better than my right. I dont think I could put the large contact lenses in my eye it seems just too hard. So i am just hoping my eye gets no worse my fear is I wont be able to drive one day and will lose my indapendance. I try to stay positive and think there is a lot of people worse off than me.

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  131. Tony says:

    Hi, as everyone already said, thanks for sharing your experiences with us, it’s definitely a long miserable road for us Keratoconus sufferers 😦
    I’m now 33 from London and much like you I’ve had problems since secondary school since around the age of 16, not being able to see the blackboard makes sense now and being rather shy to speak up about it didn’t really help either, but back then everyone, myself included just assumed “hey, why not just wear glasses?” which I did, and we all know how much that helped. I visited countless opticians desperately trying to improve my vision and it wasn’t until the age of around 22 when a friend had become an optometrist that I was told that I might have Keratoconus which was later confirmed by my hospital. Not knowing that this would be the beginning of many years of trial and error with various contact lenses I decided to take a year out from studying in hope that I’d finally be able to get my vision back, along my journey I had crosslinking in my better eye which seems to have stabilized my vision. I was also given the opportunity to have intacs on the NHS which actually did improve my vision and I was so happy I felt like crying lol There was some irritation, but I assumed it would pass, but after several weeks of barely being able to open my eye due to the irritation I was informed by moorfields that they had to be removed because they were extruding too much.
    So now I’m 33 and still trying various lenses which I haven’t been get a suitable fitting for, and the gaps in my CV are becoming more and more worrying. Apologies for what seems to be turning into a rant 🙂 to cut a long story short I’ve been silly enough to let Keratoconus affect my employment (or lack there of)
    I’m now at the point where I literally don’t know what to do. 😦 I’m 33, unemployed, my CV is very light reading material which is easily ignored, and I guess I’m just feeling sorry for myself.
    I just thought I’d use this blog as a place to share how I’m secretly feeling 😦

  132. Jon Severs says:

    Hi – sounds like you have had it pretty rough. Have they introduced you to Ken at Moorfields? If not ask to see Ken Pullum as it will be worth trying the scleral option!

  133. louisem@Adam.com.au says:

    Dear Tony,

    You’ve had a long and frustrating journey, but just because your CV is light and you have KC doesn’t mean you can’t start making some changes to help that!!! Have you thought of studying to build up your skill level and move yourself into a different pathway? I didn’t even START Uni til I was 28, and it took me 6 years to finish my degree (single parent too) but I got there, and now instead of a shitty retail job with no security and bad pay, I am a teacher, and my kids love me lots, and both students and staff are accommodating of my terrible eyesight 🙂
    Do I still have KC? Yes. Do I struggle with it daily? Yes. Does it sometimes get me down? Very much yes. (Can’t wear lenses at all as eye rejects them. Too far gone for intacts, stuck with glasses – just had first corneal transplant in right eye a year ago – hoping that helps but not much difference yet, hopefully when stitches come out it will help) Am I trying to have a better attitude about it? YES!!!
    Your KC doesn’t own you – I’m sure you are a bright, caring man with lots to offer the world. Work out what it is you love, and then how to do that (or something close to that) that you can retrain yourself to do. Get some work experience in a different industry even! We can do lots, even with KC.
    🙂
    Louise

  134. Can I simply just say what a relief to find a person that really understands
    what they are talking about over the internet.
    You actually realize how to bring an issue to light
    and make it important. A lot more people should look at this and understand this
    side of the story. I was surprised you are not more popular since you surely have the gift.

  135. Lorietta Buttigieg says:

    Hi Sue
    I am 39 years old and I’ve known that I have keratoconus since I was 31. Having read your comment, I realized that I am exactly like you!!
    I have keratoconus in both my eyes but my right eye (which is the dominant eye) is worse than my left eye. After seven years of wearing rigid lens in my right eye only (I could see perfectly clear with only this on), last year, I had to stop wearing it as I have a scar in it and it worsened, making the lens very uncomfortable and irritable. Not wearing the lens in my right eye makes it legally blind as well for me.
    My specialist suggested wearing a kerasoft lens in my left eye. This is a new soft lens for keratoconus by Bausch and Lomb which was launched last year (in 2012). Don’t know if you’ve heard of it. It’s worth a try!!!
    I’m wearing this lens in my left eye now and although vision is not as clear as when I wore my rigid lens in my right eye, quality of life is very good. I can do everything and most importantly I can drive. I forgot to mention that specialist tried kerasoft for my right eye first but since I have the scar it was not successful.
    I have learned to live with this condition. It is very hard and sometimes, each day is a struggle. I have good days and bad days (especially when it’s hot and humid, here in Malta we have lots of those!!!!) with kerasoft but at least I try to “look” at the bright side.
    Hope was of help to you and to others……
    Lor

  136. Juan says:

    I have keratoconus also and let me tell you it sucks bad!!! When i was first diagnosed with it was at age 23 working for lenscrafters how ironic right? Well the eye doctor came in the store one day and he saw me squinching my eyes when i greeted him and he told me to go get a check up so I did. It is when he diagnosed me with the eye dicease, i told my self “how bad can it get”? Boy was i Wrong!!!! It was rough at first wearing rgp lenses but i finally mastered them, the only bad thing is im constantly loosing them and they are very expensive! As im writing this i only have my right rgp lense because i dropped my left one when removing it and never saw it again. I also tend to lose balance often when only having one rgp in? Does anyone experience balance problems?

  137. Sue says:

    Hi Juan
    I wear only one lens and havent really thought that I was off balance, but now I think of it I probably do have a bit of a problem with my balance. I can not see things on the ground and can be prone to tripping over now and then, I just put it down to the kerataconus and having poor eye sight. Not actually being off balance.

  138. Sue says:

    Hi Lorietta
    Thanks for your information on kerasoft lenses. I have not heard of these. A couple of weeks ago I went back to my opthamologist and deccided to try another hard contact lense in my right eye to see if this gives me better vision. I have not worn one in this eye for about six months so it could be interesting. This is my worst eye which is apparently legally blind. My cornea is very steepened so I dont know if i am going to be able to keep it in but I am going to try. The reason I am trying this is because i am starting a new job in a hospital kitchen and want to try to get that little bit of extra vision if I can.I am seriously thinking of getting a corneal transplant in the next two years. I dont want to get it now as I am starting a new job. The thought of the corneal transplant really does scare me but I feel I have little options left. If I want to have any quality of vision I dont have much choice. I am worried if anything happens with my good(left)eye i wont be able to drive or have any quality vision, and that scares me too,

  139. J. says:

    Hi,

    I am severe keratoconus and I wear scleral but I notice that after taking them out, my vision is MUCH WORSE and sometimes I can even feel my corneas when I blink after I take them out. is this normal?

    Will scleral make my keratoconus worse in the long run?

    Thanks.

  140. Jon Severs says:

    Shouldn’t make it worse, what you are feeling is probably a little soreness from wearing them too long, and the vision is actually probably just you noticing the difference between good vision and not good vision, whereas in the mornings you see the world afresh with no comparison.

  141. zach hix says:

    Hi my name is zach im 16 years old and have had kc for a year or so I wear scleral lenses I get along perfectly fine except when there is intense glare, my eye doctor said my case was the worst he had ever seen but a trip down to Denver Colorado for a procedure has made my vision stop getting worse, I do need a cornea transplant it my right eye but it can wait, my lenses are 300$ for a pair but ive only lost 1 set so far.

  142. Ferne says:

    Hi, my name is Ferne and I am a fellow KC sufferer. I was diagnosed very young at 9 years old after I told my mum my eyes were fuzzy. I was living in New Zealand at the time and KC was virtually unheard of there. I was sent to a specialist out of town who was able to diagnose me. I wasn’t prescribed contacts until I was 14 years old, but being young and of course knowing better than everyone else I didn’t wear them all the time. I started wearing them full time from when I was 16 years old as I had just got my drivers license and my first car which I didn’t want to have an accident in. My eyes progressed very quickly and I required check ups every 6 months and new lenses every year. I am 28 now, and began wearing scleral lenses 3 years ago when I moved to Australia. I have had to replace my lenses every 3-6 months. I have been back to my optometrist today and for a change, I do not need to get new lenses, my eyes have not changed much… instead I am getting prescription glasses. My left eye is worse than my right and he mentioned today that he thinks at some stage I have had Hydrops which doesn’t suprise me because I have had an instance of severe pain years ago which lasted weeks and went undiagnosed. So I came home from the optometrist and did some research on Hydrops and stumbled across this page. I want to thank you for sharing your experiences. In some ways it gives me hope, especially having someone out there who understands how frustrating KC is. Years ago, I contemplated having the corneal graft (the only option available at the time) but I was too young and the surgery still experimental. Then intacs were introduced, but my eyes were too advanced for this. I am doing my research on cross-linking at the moment but I’m not sure if I will benefit from this if my eyes are slowing their progression. I wish you the best of luck with your sight.

  143. jerry says:

    Is corneal cross linking used in the UK? I was diagnosed with keratoconus a while I’m gonna be getting the intacs soon. I’m worried. My doctor told me I would go blind and it’s very scary. It’s something I worry about all the time.

  144. Shannon says:

    Thank you all so much for this site. I was diagnosed at 20 and am now 30. Like most, when I was diagnosed, I was not informed about KC. The doctors just kept trying to put a hard contact lens in my right eye to push it down and my eye did not like it so I was not willing to fork out the $500 at that time for it. I went without glasses until 2010 and thought nothing of it. Got glasses then and this October I got in the car to head to a party and noticed the BLUR. Hydrops. I thought I was just overthinking it but still went to the doc two days later, who sent me to another specialist. They recommended cross linking in the left(which is not approved here in the US yet) and said I need a transplant in my right eye. I did my research to find a good doctor and saw him and he scheduled me for the transplant December 17.
    After the transplant I was in a lot of pain, one of my sutures was leaking, and I had low pressure and 2 days later I had to go back into surgery to add another stitch. The 2nd surgery left me with a mean black eye due to a “block” injection they put in my eye. I have a bandage contact in my eye and am on 5 different eye drops right now. I had to return to the doctor on the following Monday for a check up and it was getting better. Then another appt. on Thursday and the new stitch broke! Of course my doctor is on a cruise this past week so I was sent to the UCLA Jules stein institute where they decided to leave he stitch for now because everything is healing up nicely besides that stitch- which is very irritating to my eye but no pain is there besides that. I can see MUCH better out of the eye but the tears keep coming so I can’t keep it open long. Hopefully on Monday my doctor can remove the stitch. I am not used to not taking care of myself and not driving myself but thank god for my mom! She has been my savior. I never knew ten years ago that this had potential to be such a debilitating condition. I’m glad I found this page and I will update on any progress- or lack there of- that comes from my experience.

  145. sue says:

    Sounds like you have had a hard time with your keratoconus. I could probably have a corneal transplant in my right eye but am too scared. I will put up with the contact lenses as long as I can. I am 45 years old and was diagnosed at about 35. My eyes seem to have stopped progressing and seem stable at the moment, but I always wonder when one day I get an eye infection or they get worse and I cannot wear contacts and with glasses I cant drive a car. That’s when you know its really going to impact your life even more. How long cant you drive for after surgery and would you recommend it. Has your vision improved greatly.

  146. louise says:

    Shannon it sounds like you’ve had such a rough trip so far – I hope it starts progressing well from here.

    I wrote a year ago just after my corneal transplant and said I’d keep ppl up to date but so far haven’t – oops! Sorry.

    Operation seems to be a success – from my surgeons point of view. He says “fantastic” and “textbook” and takes photos to use of it, but I STILL CAN’T SEE 😦 I know some degree of myopia is to be expected, but the remaining astigmatism is obviously very bad. I was legally blind before the op, and after I got a degree of sight back (if I got within 10cm of something I could see it clearly) but looking at the moon??? There used to be about 7 of them a tightly overlapping. Now I see about 14 -16 of them, and all separate!! In the shape of a giant triangle!!! Driving at night is terrifying. Watching tv is almost impossible. I’m so upset 😦 I had my stitches out last week (I had a single continuous stitch) and I hoped it would improve, instead it’s worsened (if that’s possible) my vision feels less than before the op.

    The main prob for me is that I can’t wear RGPs or sclerals, they irritate my eyeball to the point the lenses fill with mucous and I can’t keep my eyes open from the pain. My opthal and lens fitter said its the worse case of irritation theyve seen. So I’m stuck with glasses.

    My surgeon said I can get measured for glasses at the end of jan – I’m praying they will be able to fit me, I don’t want to be stuck like this.

    Other thing I’m hoping for is that the cornea is thick enough to maybe try LASIK.

    Is it wrong for me to feel annoyed about this??? I really thought I’d get some vision back, and if the graft is so good why can’t I see??? I keep hearing of all these ppl that have had grafts and have their vision back. Did it take over a year for any of you that follow this blog post?? I should be able to see by now right?

    Louise
    Australia

    Ps. Just because I’m having troubles doesn’t mean other ppl shouldn’t try it. If you’re legally blind what have you got to lose? Just because mine seems not to work, I haven’t actually lost anything – it’s not like I could see before…. I just was so, hopeful.

  147. Shannon says:

    Louise I cannot believe you cannot see still! That is terrible. I have had my contact removed now and am down to just the steroid eye drop. The cornea is healing perfectly now according to the doctor. My eye however still hasn’t opened. When I hold it open the vision is so much better though! Which is frustrating. Also my eye is constantly tearing. The doctor doesn’t understand why so we will check back in in a week to see if it has stopped.
    Sue- everyone is different on the driving thing. I sort of feel misled on this. I have read different peoples experience and most seem to be behind the wheel within a month. This is terrible for me as I live in Southern California where everyone drives and we have terrible public transportation. So I’m stuck with my car in the driveway getting rides to work with no idea when I can drive. My situation isn’t common though. Most peoples eyes seem to open back up in a few days- a week after surgery. I feel like the end result of my surgery will be a good one once I get past the irritation.

  148. Arnold says:

    Hi, my name is Arnold and I’m from South Africa and 17 years old. I noticed that my left eye’s vision had become worser than my right eye after years of rubbing my eyes. I got glasses for about a year in 2008. I got diagnosed with bilateral KC, after a significant change on my left eye prescription, in the late months of 2009 and had a cross-linking in Jan 2010. The condition has not progressed since. Glasses still work we’ll for my right eye but I need GP contacts for the left. I tried the GP and it was he’ll, so I got hybrid contacts. I hope it stays stable. God be with all of you.

  149. Tisha says:

    Hi, my name is Tisha from California and I’m 35 years old. I’ve had Keratoconus for 14 years and I have it in both eyes and it is in the severe stages for both eyes. In 2003 I had a corneal transplant in my right eye, as the progression rate from the time I found out in 2001 until the time of the transplant was 85%. From 2003 until 2011 my vision was amazing (even though my left eye continued to progress and try to distort my vision); however, in 2011 my right eye had a small rejection episode and since then the vision without my lens in on my right eye is extremely poor (even though I had a transplant in that eye). The vision with a lens in is okay, but definitely not 20/20 like it was after the transplant. Additionally, the vision in my left eye continues to get worse, even with a corrective lens over the eye, so I am bracing myself for a transplant because it seems inevitable. I have used so many variations of lens and they work for a period of time, and then my cornea shape changes and my lens need to be changed. I am currently in Jupiter Scleral lens and they have been working but over the last 24 months I’ve noticed my vision diminishing even more. I literally wear my lens from the time I wake up until the time I go to sleep because my vision or lack of is not sufficient for me to do much without my lens. If I’m in my home I can bare through tasks because I am very comfortable in my environment.

    My KC is advanced and I do not qualify for cross-linking or other programs that offer new research, so I try to stay optimistic and pray. I always tell myself, well at least I have contacts, good doctors and I can see today.

    I appreciate this blog and everyone for sharing their stories and treatment.

  150. Carol Evans says:

    Thank you to all who have taken time to share about your KC experiences. I am sure I had the disease long before being diagnosed; yet my optometrist was clueless as to my continuous symptoms of vision loss. A new optometrist immediately diagnosed my problem yet said since diagnosed later in life (early 50s) that it would not progress much more. Well it has; and now at 63 have been losing ground on eyesight way too fast. I did research at the suggestion of my optometrist which led to the decision to have expensive procedures done. I will be having the Holcomb C3-R with In-tacs performed on both eyes at the beginning of February, very soon, by Dr. Brian Boxer-Wachler in Beverly Hills, CA. This is going to cost us (as the saying goes) “an arm and a leg” plus travel and hotel etc. since we are from Illinois. Our insurance will only cover a very small part of the In-tacs procedure since out of state, The cross-linking is not yet approved in the U.S.; thus we are mostly on our own. Good grief! We had to take out of savings and cash an IRA for this – yet these are my eyes! So, of course, a priority and am grateful we could gather up the funds.

    The whole prospect of going blind is terrifying as most of you have shared. I have enormous hope that at least I’ll be able to stop the progression of this nasty eye disease My heart goes out to all of you and especially those of you who are so very young to have had to deal with this! Jon Severs, thank you, thank you thank you!! for your step by step sharing to inform others with KC about your “journey” — as well as to “hold our hands” to get through our individual saga and live strongly as you have done. Your sense of humor went a long way to ease my fears and view this more pragmatically. You are a gem to me and for all of us. Thanks again Jon! I will post again after my procedure is completed and how it works “up the road”. God bless you, Jon and all who shared! Carol, from Illinois

  151. John says:

    I am 61. I was diagnosed with KC in my early 20’s. Had rigid lenses, this was the worst time. At the time (the 70s) there was a method of trying to hold the cone in check by having the lens fit tight to it. I spent a lot of time in considerable discomfort, sometimes leaving one lens out for relief. Got pretty good at mono-vision – the only really impractical thing was trying to drive at night.

    By age 31 my KC had progressed to the point where the ophtho I was seeing (a highly regarded surgeon with terrible bedside manner to match) said the thinning in my left cornea was at the point where perforation threatened, and so advised PK (penetrating keratoplasty, the technical term for a graft or transplant).

    This turned out to be a very good choice. Recovery was relatively smooth. There was one serious rejection episode but it turned out it was just the outer layer (epithelium) that rejected and it grew back on its own. (As I understood it at the time, that may not be exactly what happened.)

    Three years later I had a graft in the right eye. For both eyes I was prescribed Boston RGPs. These gave me quite good correction – usually 20/30 in the best eye. I would have periodic (about annually) rejection-like symptoms but they would always clear with a course of steroid drops.

    At about age 45 my optometrist discovered that I was able to get good correction from eyeglasses. I’ve been wearing them since. Lately I’ve had an increase in periods where my vision is blurry. The last prescription change I went for convinced me that it is the extreme astigmatism in the grafts that is the problem. I am currently waiting to have a fitting for sclerals with my current optometrist.

    One point I want to make is about transplants (grafts, penetrating keratoplasty, PK). On this and another forum – KC-link – I’ve read a lot of bad experiences with grafts. From my experience my impression is that there are a lot of poorly-done transplants, and these lead to problems and the bad reputation. This runs counter to the data that the long-term success rate with grafts for KC is very high.

    I have had my grafts for close to 30 years now. I think the best indicators for success are:
    – Having it done by a highly-experienced practitioner/surgeon.
    – Maintaining personal health and good eye care.

    It sounds like a lot of initial grafts are done in the 30’s (age). I’ve heard of people who’ve had successive grafts done as they age. I don’t know if I would be a candidate for new grafts if it came to that, but I do wonder if my body and mind could recover as well as it did when I was young.

    And there are two things I learn from a forum like this:
    – Everyone’s experience is different, there are no guaranteed treatments for any individual, so you may have to go from one thing to the next. Corneal problems are diseases if only in the sense that there are no sure-fire, universal, permanent remedies.
    – I am not alone in my trouble. So neither are you!

  152. Jon Severs says:

    Hi John

    What a great post – really interesting to hear not only from someone with successful grafts but also someone who is doing well with keratoconus after so many years with it. Gives me lots of positivity!

    >

  153. Tisha says:

    John,
    Hearing your story made my day… having had Keratoconus since I was 23 (at least that is when it was diagnosed) but eye issues since I was 18 years, I was energized by your post. I can only pray my eyes give me as much life as your eyes at 61.

    Thanks for uplifting all of our spirits, and good luck with beating Keratoconus!

  154. Jeff G says:

    @Carol Evans – Did you have the Holcomb C3-R by Dr. Brian Boxer-Wachler in Beverly Hills, CA??? Please update us when you can.

  155. Kristin Holmes says:

    Thank you for sharing this. I was diagnosed with this disease in 2004. I am on “stage 4″wearing hybrid lenses but couldn’t wear them the last week cos I had an infection. I had to wear my old glasses and I am struggling to cope at work. I am very depressed, but am hangin on. I see the opthamologist on 7 March only at Kingbury Hospital, Cape Town. I don’t know how I am going to cope until then or where I am going or what is going to happen. I am so scared. I can identify so much with you when the opticians talk their language, I am like ‘what’?, what does that mean, what it is, it took me a few weeks to pronounce and get the spelling of Keratoconous right and when people ask me about it…..they have never heard about it and are like “huh”? Thank you for your story, I feel so frustrated right now running up and down to the doctor for my eyes….all I wanna do is be free and see!

  156. Jon Severs says:

    Keep going – I had three years of trouble like that but it does get better! Stay strong!

    >

  157. rachel says:

    hey iam 20 n i hv livd wit kc flr 7 yrs now,
    iv been reading abt da c3r holcomb treatment by dr,boxer walchler.has anybody tried t??

  158. Jakub from Czech Republic says:

    Hello,I was diagnosed with KC about 2-3 year ago,now I´m at stage 1-2 I think. (I am 22)

    I was just wondering,have anyone tried eye excercises,or pinhole glasses ? I
    recently found it on internet,and it seems like really good idea. I have now been doing eye excercises only for several days,but it already seems that with doing them,staring at computer screen at work is more comfortable. It may be psychical,but a lot of people who have videos about eye excercising say that you can really feel the difference in few days.
    I´m currently considering buying those pinhole glasses (online auction in czech republic – arround 200-300 Czech crowns (7-11 euros or 10-15 dolars). They are supposed to strengthen you eyes too (some lady with KC has a very positive video about wearing them on youtube)
    I think it is a good idea to strengthen your eyes especially when you have KC.
    I had undergo CXL on my both eyes (right one is the “sick” one,at least so far the left eye is almost OK,but I decided for left eye as well as prevention) at December 2012,and after one year(after CXL) of stable state of the disease,doctor found out that the “good eye” got i little worse,so I have been told to come for inspection after 6 months instead of 12.

    So,I have asked my question,and I wanna wish you best luck,health,and physical and mental strenght !
    Also,thank you very much for sharing your stories everyone,since it is VERY helpfull to know that you are not alone in this.

    PS. Sorry if I make a little confused sentences and word order,I´ve never been much of a writer 🙂

  159. John says:

    Re: pinhole glasses – I don’t know about strengthening your eyes, but pinhole glasses (or looking through a pinhole in any way) merely narrows down the area of light rays entering your eye, enabling you to see small areas of view relatively sharply.

    If you imagine “normal” vision (remember when you had that?!), a broad field of light rays enters your eye. They pass undisturbed through a smooth and even cornea, then through the iris, which itself is a large pinhole, and then are focused or brought together by the lens on to the retina at the “back” of your eye.

    With a corneal condition like KC, the light rays are distorted, by the cornea, before they even get a chance to pass through the iris and the lens. So the light rays are going in all different directions. The resulting “image” projected on to your retina is out-of-focus or blurry.

    By looking through a pinhole, you are massively reducing the area of light rays passing through to your eye. When this small bunch of rays pass through the cornea, they are going through a relatively small portion of it, and so are likely to end up more or less in the same direction, as they pass through the iris and lens and on to the retina.

    Before my corneal transplants I sometimes used to use a piece of cardboard with a small hole in it to read through. It was very difficult to hold it and a book at the same time! I never heard of pinhole glasses though – that could be practical.

    The big disadvantages of introducing this kind of device into your field of vision are

    – The amount of light is greatly reduced overall, so everything is darker, If you read this way you’ll need a very bright light.

    – Your field of vision is reduced down to a very narrow angle. Your peripheral vision is non-existent.

    That’s why we have evolved with the eyes that we have, to afford us a fairly wide angle of view, and to be able to collect a lot of light rays at once so we can see in relatively dim light.

  160. Jakub says:

    Thanks John !
    You made some important points.I think I´ll just order them,and then I can write some impressions.
    I was also thinking about asking about computer work.
    I basically sit at the computer 8 hours a day at work,and I´m little afraid if that couldn´t worse the condition. It is definitely not comfortable for my eyes,and I´m thinking about quiting the job..Anyone have any experience with that ?

  161. Jon Severs says:

    I’m a journalist and spend 8-10 hours at my computer a day. With regular breaks it seems fine so far… Been doing it 7 years now!

    >

  162. Shannon says:

    Just to update from my December corneal transplant- it is now healing nicely. I went back to work in January (2 weeks after surgery). The tearing has stopped. I began driving again this week. My vision in the transplanted eye is at 20/50 now, which I think was 20/500 before the hydrops happened. Sometimes I experience light sensitivity in the mornings. I recently purchased super dark prescription polarized sunglasses to help with that and it was definitely worth the money. My surgeon will begin removing stitches in a month which is very exciting.
    I commend everyone on this site who could tolerate the pain of their hydrops and wait for them to heal as I could not. I’m finally seeing a light at the end of the tunnel(literally). 🙂

  163. louise says:

    Sharon –

    How exciting for you! That’s great news 🙂

    Do you have individual sutures? Mine was a continuous suture so stitch was taken out after a year.

    Actually this is about good a time for an update on my transplant as any!!

    Unfortunately no improvement to my sight, my eye profile is flat in the middle now with a raised ridge. (Like mt Fuji in Japan) I get massive distortion of light, and still in correctable with glasses. (I can’t wear rgp’s/sclerals have tried them all)

    It’s a very disappointing result, ESP when my surgeon is so happy with how the graft has healed. Every time I go in he comments about how textbook and perfect the graft is. (I have news for you mate, the surgery is not a success unless the patients vision is restored)

    So am at the point that when i go for my next check up i will actually say how upset i am and ask about LASIK on the new eye or maybe an AP procedure to relax the new astigmatism. I’ve been polite and smiled and nodded enough. I’m sick of grinning and bearing it.

    Louise

  164. Michelle Hutson says:

    I just want to say, thank God for this post and site. I feel that I have finally found a world where someone actually undestands. I was diagnosed when I was 17 and from 18 I have been wearing sckleral lenses. I am now 31 and have experinced my first hydrops of the right eye…. Like you Ken Pullum is my consultant and absolutely amazing. Like you also I went to Moorfields a and e and was told to prepare for a corneal graft. While news of the recovery period slightly dampens my spirits the feeling of knowing that there is light at the end of the tunnel far out weighs that… Like you I am almost an expert in the condition but I am truely thankful to the person who created scleral lenses. I am heading for my first refracture on 23.03.13. Just to ask, how long before you were back driving?

  165. Tisha says:

    Michelle,
    Do not worry… the recovery period is long, but I am hearing that in recent years the recovery period and treatment is shorter. When I had a transplant in October 2003 I was off of work until April 2004 simply because my eye was red for about a month and even though vision was clearer than it had been prior to the transplant I had a few minor issues with the sutures (stitches), it seemed like my eye was healing fasting than the sutures want and they would pop, which meant I had to continually go back to the doctor to have them removed… all and all the surgery helped and changed my life… I still battle with Keratoconus and my left eye may need a graft 10+ years after the right eye had one, but I am just thankful that I can see.

    I think when you have KC you are forced to become an expert. I feel like I am a “Jr. Ophthalmologist”… LOL. I know so much about eyes, contact lens, medications (prednisolone, timolol, etc.).

    I love this site and wish everyone well. I hope your surgery goes well and you will regain vision quickly. I am praying for everyone on this site.

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  167. Shyna says:

    Hi Dear,
    Thank you for sharing. I understand what you are going thru. My brother and I have it. He now has one eye with intact and one with transplant. I am going on the same path and will have my fine is 3 weeks.

    Hope your settled down and there are no more changes.

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  169. John says:

    Hi – I’m 30 years post-transplant for KC. Had regular (spherical) rigid lenses for 20 years, then glasses. Just starting with sclerals as my astigmatism with the grafts is too severe and changes too often for glasses. It’s generally going well, vision is excellent compared to before. Only issue is clouding in left after a few hours due to metabolic waste not flushing. That clears a few hours after I’ve removed it. My optometrist is trying for less vaulting to try and reduce the amount of liquid, so potentially more oxygen getting through and less waste building up.

    I have to tell you that I haven’t read your entire post but zeroed in on the sclerals.

    My question for you is why aren’t/weren’t your sclerals made with the refraction built in? (As mine are. I suspect that possibly the manufacture of them is too expensive, is that it?)

  170. Jon says:

    Thanks for writing this article. It’s extremely helpful and informative. I was diagnosed with keracotonus just over a month ago by Bedford Eye Hospital, and I’ve been referred to Moorfields in London. No communication from Moorfields yet, which is frustrating because I’m off work (teacher ) and I’m pretty sure I’ve developed hydrops in my left eye. All the waiting around! How are you supposed to have a career with this condition? Thanks again

  171. Michelle lucien says:

    Hi. You will most definitely be able to continue with your career. I work in child protection and have managed to recover from a hydrops with only two days taken off to receive my initial treatment. I was diagnosed with the condition twelve years ago and will say that as time progresses you’ll learn how to manage. It does get frustrating at times but you definitely have to learn to take the rough with the smooth 🙂

  172. Cate Siobhan says:

    I came across your site while googling eye irritations caused by contact lenses (mine drive me absolutely mad!).
    But I don’t have keratoconus; I’m just very nearsighted with astigmatism, which is correctable with soft toric lenses.
    I really wanted to thank you for sharing your experience with this. Overall, you seem to have an immensely positive outlook about it. You’re not sitting around whining, the whole “woe-is-me” act (which I’m almost certain I would be doing, if it were me). It’s pretty inspirational, and reading this has definitely put things a bit better into perspective for me.
    So, thank you, and good luck, and I hope your eyes continue improving.
    Cheers, Cate

  173. John says:

    Here’s an update on my experience with scleral lenses. To get my backstory please read my post above from Jan 28. In short I am 30 years-post transplants for KC.

    There are some amazing pluses to the scleral lenses, and some drawbacks that we’re still working on.

    The good:

    These are incredibly comfortable! I’m barely aware of them. I can keep them in for 12 hours regularly. Nothing like RGP sphericals. Nothing gets under them so there’s no irritation from dust etc.

    If your cornea allows for a good fit, and if it can tolerate them, vision can be almost perfect.

    The bad:

    They are expensive. Here in Toronto where a regular set of RGP’s would probably be about $2-300, the sclerals are $1000.
    —–
    Suitably (increasingly) gas-permaeable versions are still being developed.
    —–
    For the above two reasons, usage has been relatively low. Correspondingly, optometrists or opticians who fit them are hard to find. (This is my understanding of the situation.)
    —–
    It takes a while to learn to insert them. It’s took me about a month to get comfortable with doing it easily. But if you are good with regular RGP’s, you can learn to do it with your fingers. Otherwise there is a little suction holder that you can use.

    —–
    This next one has been the major drawback so far. The design of these lenses is such that a pool of solution is sealed over your cornea for as long as you have them on. This is what allows for the smooth optical medium that negates the astigmatism of KC or a graft.

    The difficulty with this can be that the metabolic waste that is generated by your cornea, and which is normally washed away by regular tearing, builds up in this pool. Your cornea may react to this and start to cloud up. My left does react. (The cloudiness starts after a few hours, but goes away a few hours after removal.) My right, fortunately, does not.

    I am soon going to be trying another fit for my left with 2 changes:
    – the lens material will be the most permeable available
    – the space for the solution will be smaller

    Hopefully this will make the environment more agreeable for the left graft cornea. If not, I will probably have two choices:
    – live with very good vision in my right and very poor in the left (no lens). This wouldn’t be the end of the world. The vision I am getting with the right is the best I’ve had in many years. With poor left vision and good right, I would have decreased peripheral vision and perspective, which is difficult in some situations.
    – explore the possibility of a second graft for the left.

    Hope this is a possibility for some of you. It’s a developing technology.

  174. John says:

    The stories being given in this post create a whole range of thoughts, fears, and hope. I applaud you all. My son was diagnosed 6 years ago, and many of the stories of progression are beiginning to sound too familiar.
    One thing I do not find in the posts…..references to very many doctors who are advanced in their knowledge of treatments. Could someone…or everyone please share more of who you went to, their degree of expertise, so others can follow your steps to getting good care? Many optometrist only know of the disease, and have to do research to find out where to send you. This is the biggest concern of my son and his family. We live in Illinois. Is there someone in St Louis, MO, Chicago, Indianapolis? Where do we go and who do we start with?

  175. James says:

    That image is worth a thousand words. That’e keratoconus exactamento!

  176. Ali says:

    Is there anyone had KC before and totally healed now? PLEASE PAY ATTENTION TO MY QUESTION… Thank you…

  177. divad75 says:

    Thank you for this post you’ve provided me with answers to a lot of issues which I didn’t realise where so until now – like not being able to handle bright lights and having one eye that’s nearly a goner (my right one -12 sight or lack off) and nearly perfect vision in the other. I had the cross link procedure done a few months ago and I hope it’s stopped my eye from deteriorating further but my gut is telling me I will need further treatment. The contact I wear helps but I still feel like am only using my left eye and for someone who’s a writer my eyes ache quite a bit especially when am at my computer which is most of the time. It’s a horrible condition and unless you suffer from it no one really gets how painful it can be and the negative effect it can have on you. am very lucky to have found a doc who I’m very comfortable with and I think that’s vital. Anyway thanks again for the post.

  178. John says:

    How does somone go about finding a doctor who is very familiarr and qualified to treat this disease?

  179. John says:

    I would start by finding, perhaps with the help of your GP, the closest hospital to you that most specializes in ophthalmology. Then get a referral to a corneal specialist there.

  180. Lynette says:

    I’m 44. I’ve had keratoconus since i was 14. I had a transplant at age 19 in the left eye. In two months I’m getting a transplant in my right eye. I have always worn glasses as i can’t tolerate any lenses in my eye. I tried rgp’s twice but just couldnt wear them longer than 4 hrs or so and that was a struggle. I went many years without much treatment because I either had terrible health insurance or none at all. I had 20/30 vision with glasses in my left eye after the transplant so i got by. Then my vision deteriorated in my transplant eye. I had a relaxation incision done 3 mos ago. I immediately could see better. Looking forward to seeing better after my surgery in november. Maybe i can see well out of both eyes at the same time finally!!

  181. louise says:

    Hey.

    I’ve written a few times over the years and an writing now as I’m getting to the point that I just can’t cope anymore. Both my eyes are bad, my right in particular is 6:120 (in Australia we use 6 for meters instead of 20 for feet. Had corneal transplant nearlyn2 years ago. Still blind on right side. Had relaxing incisions 3 weeks ago. Still blind on right side. Have been told that I’m now incredibly myopic (short sighted) but my surgeon says post kerotaplasty laser surgery has bad results.
    My left eye can’t see without glasses anymore either, and I can feel its getting worse year to year. I’m 39 years old.

    What do I do???? Like the previous poster I can’t tolerate rgp’s or sclerals. I am worried that ill have to stop driving 😦

    It makes me so bitter to think of all the ppl who wrote and say they have a transplant and now see again. I can’t see anything 😦 relaxing incisions did nothing. I could scream with the frustration.

    The worse thing is is when I say to people “oh I can’t see that” they invariably say “but didnt you have that operation…?” They don’t understand. And I feel Terri le because I haven’t written to my donor eye family to say thank you because I don’t want to lie to them and say “its a miracle and I can see again thanks to your family member” because it’s a lie. I still am legally blind. I hate it. I don’t know what to do anymore.

    Louise, Adelaide.
    Australia

  182. Jessica says:

    Hello. I am so very thankful that I found this site. I am 34 and just got told that I have keratoconus. I have been so depressed and scared because of the lack of information. I have been on the web non stop for the last two weeks trying to figure out what exactly keratoconus is and what options I have. I just got fitted for sceral lenses this week and will have them within the next two weeks. I was shocked by the price but now thankful after reading what others have paid. I paid $900 for the set and my fitting. I will update on how they fit and how well my vision is ASAP.

    Jessica- Knoxville TN

  183. John says:

    Hi Jessica – Glad to hear you’re checking out scleral lenses. If you can tolerate rigid lenses, if you find someone who can fit and order them properly, and if you can afford them, I think they are the way to go. I’m 62 and got my grafts when I was in my 30s, but I kind of wish I had the sclerals from the beginning. Reason being that they negate the effects of astigmatism, which is really the essential problem with KC and with grafts. A few important points I would make:

    – It is possible that, depending on how progressed your KC is, you may still be able to get correction from glasses. (Though I imagine you must have gotten to this point because you could no longer get enough correction from glasses.) There are also regular rigid lenses, which may be a good option if sclerals don’t work out. But I can tell you that sclerals, if they work for you, are way better in important ways. Mostly comfort, for which there is no comparison.

    – One possible complication with sclerals is that your corneas may not be able to tolerate them for long periods of time. Because they create an almost complete seal around the cornea, they cut off a lot of oxygen, and your eyes can’t rinse out normal metabolic waste as well as they normally would. This can cause swelling and cloudiness (edema), and require reduced wearing time. In my case (and because I have grafts they’re probably less tolerant in the first place) – my right is fine with the lens all day, 12 hours or more no problem. But the left is different – it clouds up a bit after just a few hours. But, because the vision in the right is so good, I can mostly get by on it alone. Lately I put in the left if I know I’m going to be driving, especially at night. For a few hours I can see like a hawk. The rest of the time I’m relying on the right. My brain seems to adapt fairly easily to ignoring the blurry view of the uncorrected left. (I am actually going to be getting a regraft on the left, hopefully buy the end of the year. Once that’s healed enough I should be able to get a scleral for it.)

    – You will have to see, because everyone is different. In fact if you can find an optometrist who will fit them conditionally, so that if they don’t work you don’t have to pay, or at least not the full amount.

  184. Jon Severs says:

    Great post John. I need to update the Sclerals page actually as I am just experiencing the wear time issue. I had both eyes with sclerals for 15-16 hours per day and was doing fine but in my last appointment they spotted vessel growth in the cornea of my right eye. I have cut wear time to 10 hours in this eye as a result. And reduced left eye down to 12 hours. I did not expect a differene in vision when the lenses were in but i can see so much better at work now. It just means my 2 hr commute in to work is done without lenses, which considering I have to walk through London is a lot of fun!

    On 9 September 2014 20:17, Keratoconus Info wrote:

    >

  185. Jessica says:

    Hey John! Thanks for the reply and sharing of your story. My glasses work pretty good during the day but night time is another story. Headlights from passing cars nearly blind me and I get starbursts around street lights. I also noticed within the last few months my eyes got very tried and hurt when I’m on the computer for any extended amount of time. The letters would almost stack on top of one another. I wore regular single vision soft disposable contact lenes with out any trouble until 5 years ago. Then the doctor said I had astigmatism and switched me to a soft disposable toric lens. I wore these with no issues up until this time last year. I first noticed my eyes were super dry and I had to keep drops in them at all times. Then my vison would get worse in them as the day progressed because I now know they were turning in my eyes due to the keratoconus. So after two opinions and lots of money that I really didn’t have it was confirmed as a moderate case of keratoconus. I have went through all the emotions sadness, anger, and confusion. So yesterday my doctor put many scleral lenes in my eyes. My left took contact #2 almost instantly. The right eye which is the worst took contact #4 nicely. Now my last set of contacts had a script of -3.25-2.75×160 right and -2.75-2.25×10 left. Well this was a false script due to the keratoconus. Yesterday the doctor set my right eye at -.75 and my left eye at -1.50 with no astigmatism correction I saw 20/20 for the first time in over a year. I know some of you are probley like so what or maybe mad. My posted is not intended to do that nor to brag about anything. I was just amazed that keratoconus could make my script so off because of the steepness in my eyes. My right eye has a good amount of steepness at the bottom and the left is the classic bow tie located up and down not side to side. I opted for the scleral lenses in hope that it would slow the progression of the keratoconus as well as to get better vision. I wish anyone that has keratoconus the best of luck and a big hug. My journey has just begun and I know I have a long road ahead but I’m glad that I don’t have to face it alone. I want to thank each and everyone of your for your stories and posts. My prayers and positive energy goes out to everyone of you.

    Jessica – Knoxville TN

  186. rachel says:

    hello everyone
    thank you jessica for the encouragement,i hvnt seen a doctor for 2 yrs now cz da opthlamologist i was seeing passed away( may his soul rest in peace) but i keep on goggling to see the lasres news about kc
    i wonder how the person who started this site is doing,ptliz update us,all the best in all ur endevours
    rachel ,kampala uganda

  187. Jessica says:

    Hey Rachel. Sorry to hear about the passing of your doctor. That makes it tough because good KC drs are hard to find. Luckily my drs specialty is KC patients and sceral lenses. I would google opotomlogists in your area that fit sceral lenses. It would be worth a shot, this is your vision and I would def give it a try. And ask questions! I spent 2 house with my dr just asking her things I knew the answer to as well as things I didn’t. I went to one dr who was clueless when they get on google to find answers I believe that’s a red flag. I wish you the best if luck and hope you find a good dr with knowledge about keratoconus.

    Jessica- TN

  188. Lorietta says:

    Hi
    I go into this site often as, having keratoconus in both my eyes, you people give me a lot of courage and support. The last time I wrote something was a year ago. Today I found out about pinhole glasses!! I really need something to help my driving at night as I do not drive anymore. The lights drive me crazy and I definetely feel and AM “legally blind” to drive at night. I feel really helpless. Can anyone please suggest anything? Do these pinhole glasses work at night and are there any special ones for nightime?
    By the way, I wear kerasoft lenses in my left eye which at least give me a satisfactory vision during the day…..
    Thank you
    Lor

  189. John says:

    Lorietta:

    Pinhole glasses require a bright light situation where you do not need a lot of peripheral vision. So they wouldn’t be suitable for driving even in the daytime, let alone at night. You should read up about scleral lenses. I have a post ^^ that tells a lot about them.

    John

  190. Jon Severs says:

    John’s right – and scleral lenses sorted a lot of my glare issues (though did not fix then) recently I have found that the ‘fresher’ the scleral lenses are (ie less wear time before driving) the less glare

    >

  191. Jessica says:

    Hey guys! Got my scleral lenses on Monday and am very impressed with them. Only wearing them for about 6 hours right now but they aren’t as uncomfortable as I thought they would be. It is taking some time for my eye lids to get used to them. I do have a questions for the experienced wearers out there. Is it normal for your vison to be fuzzy for hours after you take them out? I took them out tonight and it took me 3 hours to see normal out of my glasses again. It kinda freaked me out. Also my eyes are super tired. Is this normal and how long does it take to get used to them? Also any advice would be appreciated. Thanks for your time in advance.

    Jessica

  192. Jon Severs says:

    Hi jessica – my eyes without lenses are so bad I would not be able to tell you! As for wear time – after a month or so I had them up to 12 hours no problem as long as I kept them clean and used a preservative remover once per week

    >

  193. Ravi Singh says:

    Hi guys,

    I am 44 years old and have KC in both eyes. I was incorrectly diagnosed many years ago and spent the last 20 odd years living with this condition. Itching, watering, extreme light sensitivity, pain, redness etc. Every two years or so I would get new pair of glasses which grew thicker over the years ( almost half inch on the ends ) plenty of eye drops, steroids, injections into the eye etc. Funds were not available to get specialist help. About two years ago I entered our local university eye clinic, were I was diagnosed with KC in both eyes. They could not get a correct reading for glasses and I was referred to a government hospital.

    I spent two years with them on monthly visits, up to six doctors examining me at once. They were very thorough. During my treatment with them, which firstly was trying to reduce the allergies and reducing the redness. I was placed on the waiting list for cross-linking. ( wheels turn slower than the private hospitals ). While under steroids eye drops I had a major out break / infection of lumps on my upper eye lid and my back ( this was very gross, pus, bleeding ). All treatment was stopped and I waited a few months for my condition to settle down.

    My next appointment was for cross-linking ( cost +/- $750 ), which was not done because by this time my eyes had weakened or thinned. My right was down to 370 microns and the left was now down to 310 microns. The required thickness to preform cross-linking is 400 microns and the patient should not be more than 45 years of age and of general good health. Cross-linking take about 30 minutes per procedure. Any treatment less than that means more trips to your doctor and more cost.

    Next I was placed on the waiting list for corneal transplants and while preparing for this, it was discovered than my stem cell has a very low count and that the graft will not hold. So my next option was to have stem cell grafts. By now I sitting in catch 22 situation.

    One of the surgeons recommended scleral contact lens. Which has to done in the private sector. It has been six months now with them on. I have had the most amazing optometrist. She was very patient with me, some of my early sessions took up to six hours. I had major difficultly inserting them into my eyes. After many hours of trial and error we found the best option for me was to have the bottom of the insertion holder cut off. So when I look into the saline solution filled lens I can see straight through the holder. And the most simple method to have them inserted for me is to sit upright on a chair at a table with a mirror on top of the table. Bring my head parallel to the mirror I use my left thumb and forefinger to hold my left eye lids opened and with my right fingers and the add of the insertion tube insert the left lens in. Vice versa for the right eye. Total cost in SA is +/- $500.

    I am using them for about five months. It is very comfortable and it take me two minutes to have both inserted. My vision on the right eyes is 20/20 and on the left slightly weaker. But it like seeing a hold new world. I can see my wife face clearly. There is more colour in the world. It is great. However the downside, on a good day I can use them up to 10 – 12 hours at a time. On other days I need to change the saline very two hours or so. It get very cloudy / misty. This is caused by protein from the tears to buildup and become entrapped within the lens. The cost to maintain them is also high and ongoing. But by shopping around or buying your solutions and cleaning agents when your drug store has a sale will help. Been laid off of for six years now self employed does not help either.

    Scleral lens have been around a very long time. In fact Da Vinci was one of the first people to use them. They fell of the market around 1920’s and returned during the 1970’s. Since then they have become more popular for the treatment of KC. More so I think because of the difficulty in having them sized and fitted. It takes a few visits to your optometrist, they may have to be re sized a few time. And your optometrist must be very patient with you. Each case is unique because we are humans. Should any of you have a solution or home remedy to reduce the protein build in the lens please let me know.

    My advice to all is to give scleral lens a try first for any KC’s out there.

    best wishers
    Ravi Singh
    South Africa.

  194. Rayna says:

    Am scheduled for the cross linking surgery in 2 weeks ! Anyone have any information for me?

  195. Ravi Singh says:

    Hi Rayna

    Cross linking was developed in a Dresden University in Germany in 1995. It all depends upon your doctor and his or her experience in rendering the treatment. The distance of which the UV light is held from your eye and also the strength of the lights that passes through your eye. All of which you have no control. I do know that the thickness of your corneal should not be lower than 400 microns, Of the many people that I have meet at the eye clinic who have undergone this treatment had to have repeated surgery.

    I have kc for the past 20 years in both my eyes and was due to have the cross linking as well. My corneal weekended down to 321 ( L ) and 355 ( R ) and this make the surgery quite risky on the left eye. My surgeon asked my to give scleral contact lens. I have them since May this year and they are great with 20/20 vision right eye and 20/40 vision with my left eye.

    My advice is to go this route first it has helped me. Also repeated surgery is also costly.

    good luck
    Ravi
    South Africa.

  196. Jessica says:

    Quick update. So it’s been about a month since I got my sceral lenses. Somedays they go in fine with one or two attempts. Then I have days I give up and just wear my glasses. Any tips that may help me will be greatly appreciated. They can be difficult little boogers to get in but I can take them out with the plunger no problem. I can only wear them about 8 or 9 hours right now. Any wear time over that and my eyes are very red and too sore to wear them the next day. I have noticed that after I take them out and put my glasses on everything is very blurry. I told my eye doctor and she said that is normal but it freaks me out. I see so bad with my glasses after I take them out that I would be unable to drive. Does anyone have the same issue? Please tell me this is normal!?! I know the lenses reshape my eye and it can take a little while to adjust to glasses afterwards. However it is taking my eyes 3 hours to adjust back to normal after I take them out. Looking forward to some replies.

    Thanks,

    Jessica
    Knoxville, TN

  197. Jon Severs says:

    Took me about a month too and yeah does take a while to adjust back but it all settles after a while and the more you wear the more settled everything gets – keep persevering!

    >

  198. John says:

    I have 30+ year-old grafts and am 6 months with sclerals. I’m only wearing the left half the day as it’s prone to cloud up – I’m actually getting a regraft on it soon.

    Most of the time the right is excellent, 20/20. Some mornings I have to insert 2 or 3 times and/or wait an hour or so before it settles into a good position for vision.

    Comfort is always fantastic, nothing at all like regular RGP’s.

    As for insertion, because I’ve had a long history with RGP’s before, I’m quite accustomed to inserting with my fingers. If you are able to, I advise trying it and persisting. After a month or so I got quite good at it. Usually it’s no problem.

    In spite of all this, they are still the best thing for me. There are several aspects that take adjustment, but my vision is miles better than I’ve had for a very long time.

  199. Ravi Singh says:

    HI Jessica,

    Cut of the end of the holder which is used to hold the lens. You will be able to see right through. Use a mirror on a table, with your head over it you will be able to position the lens inline correctly. For you left eye, open your eye lids with your your left thumb and forefinger using your right fingers with the holder and lens, insert. Vice versa for your right eye.

    If your lens are causing you discomfort or redness, then your doctor may need to adjust the lens by reshaping them. They may be fitting to tightly. Keep on trying it will get much simpler with time.

    warmest regards
    Ravi
    South Africa.

  200. Jessica says:

    I was taught to insert with my fingers and not the holder. I will try it that was and see which works better. Does anyone have the blurry vision after you take them out even while wearing your glasses?

    Thx
    Jessica

  201. Jessica says:

    Oh btw I have to stand up while inserting sitting down just doesn’t work for me. I think my table might be too high. I stand using a mirror otherwise it doesn’t work out.

  202. Jessica says:

    Thanks Jon. I just saw your comment in my inbox. I will keep trying. I could not wear them today as my allergies are horrible. I live in Tennessee very beautiful with bright fall colors right now. Ragweed and pollen code red today and my eyes told me before the news did! Lol. Have a great day!

  203. Jamilla says:

    Hallelujah!!! I suddenly feel like I’m home after searching for a long, long, lonely time! Finally people who know exactly what I’ve been experiencing all these years! I read the post like a thirsty gal drinking water after being out in the desert!! This man had been peeping at my life! lol! My eyes brightened up with every line and I smiled most of the way through the various revelations.
    Well Since I think I would be here for a while let me introduce myself. I am Jamilla. I am from the beautiful islands of Trinidad and Tobago. West.Indies. I live in the smaller island of Tobago. I am a teacher (Biology) at a secondary school. I’m 52 yrs young!
    I’ve had eye problems since age 11 yrs. Unfortunately it was misdiagnosed as myopia (nearsightedness) for the next 6 years during that time I was at secondary school and changed lens so frequently that my frames could not keep up! The lens were thick and hideous! (that’s what the teen me thought). Finally I saw someone wearing a contact lens and I thought that may be so cool! That was how my diagnosis came KERATOCONAS! By an optometrist! not the countless ophthalmologists that my mom had been carrying me off to see! smh!
    Well there begun another chapter as I was first introduced to hard on soft lenses in both eyes! At age 17yrs! I hated mornings as I could not lift my eye lids before about 10.00am. Pain, tearing and discomfort! I was told by the optometrist. Mr. Subash Sharma that the eye had to adjust! Finally after six weeks of that he changed the prescription to hard contacts. Life was better for a while.
    The cornea however continued to steepen until the contacts became so unstable that they fell off too frequently. He suggested that due to the severity of the disease I would need to have a CORNEAL TRANSPLANT done! But at the time we were looking to private sources at Bascombe Palmer Eye in Miami. The cost was approx. $30.000 or thereabout!
    Well my family could not afford that at that time. We began activities to raise funds in the midst of that ORBIS eye plane visited Trinidad. My mom and I reached on the tarmac to get help on that plane. Its still too painful to recall. I could have gotten help then however I was told to get any files I had to hasten the process of diagnosing and treatment. We went to the optometrist – he said it did not make sense going as they did not have an eye bank on the plane! Stupidly I believed him! (Sometimes we put so must trust in those who care for us that we loose our ability to think for ourselves) Although they asked for people to come in for the duration of their(ORBIS) three week visit – I refused to go! Enough on that! But I know now that was not my time!
    A few months later I was told about another Doctor Dr. John George Head Ophthalmologist at the San Fernando General Hospital. I saw him at his private practice. When he first saw the eyes he sat back and shook his head! He asked me why I did not come to the ORBIS screening? He said my corneas were so steep that mine would have been the first case to be done! I cried the whole 25 miles home!
    Eventually in November -December 1985 a group of us were operated on at the San Fernando General Hospital. At the time it was spearheaded by renown Opthalmologist decease Dr Garth Taylor (Co-founder and a Director of CANSEE) I was the first and had the privilege of being the guinea pig (come on smile)! For which I am eternally grateful! I was used to teach doctors and nurses in corneal transplant surgery! I continue to remember the family who’s generosity made it all possible! My right eye was operated on as it was the worst of the two! At first my sight improved 500%.
    There were the ups and downs but it served me well for the most part. At first I still had to revert to spectacles and then eventually GP Contacts as the keratoconas was still advancing! Unfortunately though in 1990 this graft went bad! at the time I did not understand! I finally do today!!! Thank You for your post! Never have I heard this from my doctors! I started to see the puffy white clouds! then all of it went cloudy!!!!!!! I was diagnosed as legally blind and walked with a cane as I off balanced and saw only faceless forms, colours and blurred lights.
    I did regain some sight although diminished in six months. I again was fitted with a contacts and I managed to get by! i even went back to school and eventually begun an undergraduate degree at the U.W.I St Augustine in 1983! Of course I was very challenged as there was little in place to assist persons with disabilities at that time!
    Almost at the end of my degree ORBIS returned to T&T. This time I had my left eye operated on!!!!! That’s the good one I currently use. It works very well, however I still wear the GP Contacts for details. Like you I try to rest them when I can as they are on from morning to nighttime!
    I do see my ophthalmologist Dr. Deo Singh of the Caribbean Eye Institute in Valsyn Trinidad at least twice yearly.
    Earlier this year he told me that I may be able to have the right eye’s graft redone.
    NOW HERE’S THE BIG ONE THAT I WOULD LOVE SOME FEEDBACK ON!!! I’m scheduled to have surgery Friday 31st October! This Friday coming! The thing is one of the doctors on the team thinks that the surgery will not help my situation. You see after the second op My right eye squinted all the way outward to the side. He said the squint will not be corrected by just the corneal graft. Actually I came upon this site by researching on whether anyone has had their squint corrected by a corneal graft.

    So there’s it part of my life in a nutshell! Really happy to share. Hope I have helped someone as much as this post has helped me thus far! ;D

  204. Ravi Singh says:

    Hi Jamilla

    Best wishers on your upcoming op. I have KC for the past 20 odd years and use scleral lens with mush improvement. You can read my past post for the full history.

    warm regards Ravi South Africa.

  205. Jamilla says:

    Thank you Ravi. I will enquire about those lens. I haven’t heard of them from my eye care team. Talk soon!

  206. rachel says:

    hello Ravi,i came ro cape town to meet a doctor called christa joubert ,i live in kampala uganda n i cldnt fyd a doctor for my keratoconus ther n my cousin found me this one in capetown,Ravi whr do u live? may b we cld meet n talk more cz ma cousin wants to kno more abt k n another person cld help me explain cz i sometyms dnt tell them everything, i hop i dnt get surgery,ill ask about da sceleral lenses ,they sound good,r they comfortable in da eyes,ma eyes get dry mostyms
    Rachel ,kampala uganda
    reach me on racquellove93@gmail.com or on watsaap on +256700991908,we cld mak a chat group.God bless

  207. Naj says:

    Thank you for your brilliantly detailed experience of the disease. I was diagnosed with this disease at the age of 11 at Moorfields and was given gas permiable lenses, i tried so hard to wear the lenses and had such a bad experience with them where the lens got stuck at the top of my eye and my mother had to come into school to take it out, at only age 11 I was really freaked out by the incident and embarrassed about having to wear these contact lenses because when wearing them i had to squint. so i ditched my contacts and sat closer to the board and never looked back I’m now 20 years old and have lived my life fine with out it. However I’m now a little worried because it will be 10 years since i was diagnosed with the disease in march and I’m not really affected by the disease i see fine without any help, any experiences like this? I’m sure i will have to start wearing contact lenses again because i will be learning how yo drive soon.

  208. rachel says:

    i travelled to capetown southafrica from uganda to get treatment for my kc because da opthlamologists in uganda have no experience with kc,iv got xlinking done in my left eye and yesterday i went to an opgometrist calld kevvin peppin n got scleral lenses fitted and my sight was amazing n ghey weee comfortable for the 3hours i was wearing them,so am looking forward to getting da lensestho they are quite costly we paid 8979 rand,
    regards rachel

  209. John says:

    Good luck with the sclerals. That is about the same as the price here in Canada. You may find it difficult and frustrating to put them in for a while, but don’t worry, this is normal! You’ll get good at it and it will be no problem.

  210. Jessica says:

    Having some issues with bad allergies right now. Haven’t been able to wear my sclerals this week. Doctor gave me eye drops but they aren’t helping at all. Any suggestions for some relief so I can wear comfortably again? They have been dry and it feels like I have sand in them.

  211. Jon Severs says:

    Was going to create a page for allergies etc actually as allergies, asthma and some digestion problems appear to be common factors with keratoconus. I use opticrom for my eye allergies – it works after two weeks of use

    >

  212. Lorietta says:

    Hi Naj,
    don’t give up! Now you can find Kerasoft lenses (instead of gas permaibles) which are soft lenses designed for keratoconus patients. I use them and they are really comfortable and give me a satisfactory vision.
    Good luck! And thank you to you all for your continuous support. We’re all in this together!

  213. Jamilla says:

    Hello all! Well I’m here again with a brand new cornea! I’m forever humbled and grateful for ALL those involved in giving me this additional gift of sight!

    I had the surgery on Friday 31st at approx 3pm. I was out of the hospital by about 6.30pm! I returned the following morning at 9.00am to remove the covering.

    From the very moment they removed the bandage my right eye saw this bright, clear, beautiful image! I was seeing out of the eye! Everything looked so new! Praises to the most high, most merciful!

    I am using Pret Forte and Vigamox every two and thre hours while Im awake.
    I am also using Restasis three times a day. There are some other ointment and drops that I was prescribed but I cant get them here. I have to send for them.

    Except for a little soreness just after waking and running just after inserting the drops, I am fine. I never had to take painkillers!

    I am back out to school already. Started teaching on Friday. My students are wonderful and they stare into my eyes!

    I know eventually I would have to wear something on the eye as although I can see the vision is not 20/20! But I’ve gone from seeing hand movements (Not even counting fingers) to reading the second line. I also read the third and some of the fourth line with the pin hole screen!!!

    Man and modern medicine!!!

    So to all my new found friends thanks for your kind thoughts and wishes.
    I continue to improve daily. I know that it is a long way to full recovery but I’m very grateful and hopeful!

  214. Jessica says:

    Jamilla this is such wonderful news! I am so very happy for you! I’m also so excited to share in your happiness! I could tell by your words you are a kind and positive person. I wish the best for you. I would also like to wish you and your family a very happy holiday season. I don’t know what holiday you celebrate. However I do know it will be wonderful being able to see the faces of your loved ones much clearer.

    Regards,

    Jessica
    Knoxville, TN

  215. rachel says:

    hello
    am 21years n i had put skool to a halt coz of kc but am getting scleral lenses in 3days but at this point in life am confused about what to study,any suggestions, at this point i cnt svn think of wat i like,
    rachel

  216. Jessica says:

    Find what makes your heart happy and do it. Life is short. The years go by faster the older you get. Don’t let KC keep you from living the life you deserve. Keep positive and things will fall into place. No one can tell you what will make you happy. You will have to make that decision for yourself. Remember you CAN do ANYTHING you just half to want it bad enough! I hope this helps. Take care and happy holidays!

    Jessica

  217. Jamilla says:

    Thank you Jessica for your kind words and best wishes. As you would see in my initial entry I did have sight through my previous corneal transplants however my right eye had gotten hydrops and deteriorated to the extent that I was medically and legally blind in it! I only saw out of my left eye with contacts and that right eye was a blurr! What I have gotten is a regraft in that right eye! But yes it is sooooooo good to now actively use that eye again! It broadens my peripheral vision!!!
    I am so thankful for this site! I just want to tell all KC persons out there that you do have value! It may be challenging but boy do we get the job done! If I did not tell people that I had an eye defect they would not know! Stay positive and love the life you have or go out and change it! Until take care!

  218. Gerhard Bezuidenhout says:

    Hi Ravi

    Who is the optometrist in South Africa that helped you with the lenses. My son has KC (was diagnosed at 15; is now almost 18). We had lenses made for him a year and a half ago for more than R5000 and he cannot wear them at all. His corneas are also too thin for Cross-Linking.

    Gerhard

  219. rachel says:

    hello Gerthard,i had crosslinking like a month ago and i got sceleral lenses fitted by an optometrist called kereven peppin in platerkloof and he had this mordern technology equipments and the fitting is perfect,my sight is wonderful.the lenses and the fitting and all the solutioncost R10000 but iam so happy with my sight now.

  220. Ravi Singh says:

    Hi Gerhard

    My optometrist is Yurisa Naidoo. Her email is yurisa@mweb.co.za She is base in Durban, should you require her contact numbers please mail me. She is excellent and very patient and very helpful. She also works very closely with doctors dealing with KC.

    Happy holidays and best wishes to your son. I wish my parents did the same for me at that age.

    warm regards
    Ravi.

  221. John says:

    Anyone in law enforcement and dealing with keratoconus?

  222. Hi All – first off, great blog. I wish I found this long ago. I recently discovered this site after getting CXL and an Intac for my Keratoconus. I also documented my history and experience with treatments – I thought I’d share it here in case it helps anyone else: http://mykcexperience.wordpress.com/

  223. demian vargas says:

    Your story is helpful to read. I was diagnosed in 2002. I just received the newest hybrid lens. I’m hoping these work out for a while. They are hard to insert & take out but they seem better than hard lenses often popping out for no reason. Your attitude is helpful to me because it matches mine. Pragmatic & hopeful. I hope you are doing well!

  224. Really when someone doesn’t be aware of after that its
    up to other users that they will assist, so here it takes place.

  225. Misal Panchal says:

    Hi everyone. First of all, thank you for all your comments and the original poster for this wonderful timeline of events! I was diagnosed with KC just over a year ago. I ended up getting scleral lens. They worked like a charm. 6 months after, I underwent CXL in India and it was the epi off version. Extremely painful procedure since you have to keep your eyes open for a very long time. However, the epithelium healed very quickly. I continued using my scleral lens for a good 3 months or so after just like I had previously. However, I started for the first time noticing that my vision was getting very foggy with the lenses. There were times when the vision was perfect after insertion of lens and other times I wasn’t able to achieve that same type of vision. Just about a week ago, I got new scleral lens after my optometrist decided that my eyes had changed. It’s extremely frustrating because as average patient, I can’t really make sense of how the eyes have changed. I have yet to send my 3 month topographies to the original ophthalmologist to assess how the eyes are changing and I will surely post back. Even with the new scleral lens in, my vision is still fogging up at times. Anyone else with a similar problem with their sclerals? My lenses are very big!

  226. Ravi Singh says:

    Hi Misal,

    I am using scleral lens for the past year. I have KC for 20 years. My vision is excellent with the lens and I can use them for up to 18 hours per day. However they also get foggy and I constantly need to replace the solution in the lens and reinsert them.

    On a good day, I change them twice and on other days the are multiple changes. Your foggy lens are caused by protein buildup. Our tears are made up of three parts and they clean our eyes throughout the day. When wearing our lens the protein that is found in the tears get trapped within the lens. Thus forming the foggy / cloudy vision.

    We are all individuals, so this protein buildup will vary from person to person. I have been trying to find ways to reduce the protein buildup by changing my diets but to no success as yet. Also our body needs the protein.

    My doc’s want me to undergo CXL. I am not sure that like the idea. For one, my eyes are very thin 309 and 348 micron. And I have spoken to many who have underwent it and were not happy with the results. Once you had CXL you should have moved off scleral lens!

    What type of CXL?, did you have epic-on or epic-off done? Also how many microns were your cornea when you had the procedure?

    Please let me know?
    Warm wishes
    Ravi Singh.

  227. John says:

    Hi – Re: sclerals, if your fogginess develops after a few hours and is not relieved by cleaning and re-insertion, it’s possible that your corneas are not getting enough oxygen and start to cloud. I have that situation, but I have grafts that are 30 years old. The left clouds as I described, so I only wear the lens on it part of the day. The right is fine for over 12 hours a day with just one re-insertion in the afternoon. I am getting a re-graft of the left soon with the aim of eventually having a graft that can tolerate the lens better.

  228. NANDO says:

    Hello all- Great to find this blog! i was diagnosed with KC at 18 years old, it changed my life instantly. i had just shipped off to basic training for the US Army, i was having trouble seeing correctly with my glasses and was sent to see an Army Ophthalmologist. She told me i had KC and three weeks later i was discharged from the Army, as ” Unfit for service.” It was heartbreaking and changed the course of my life. i am Now 32 years old and have and a good life. My KC has been very aggressive and i used the small RGP Lens for about seven years, i have know been using the scleral lens for the past seven years. They have been good but have gotten a little more difficult since 2012 when i got Hydrops in both my left and right eyes. i now have some scar tissue on my corneas and they have made the lens even harder to fit. The doctors have now said it is about time for me to have the cornea transplants. Thank you, feels great to tell my story to those who understand.

  229. Jon Severs says:

    Thanks for posting this, it sounds like you are at the same stage as me. I haven’t updated in a while, but I got offered surgery too for the same reasons, though my left eye is good enough (it’s driving standard) to not make surgery necessary straight away. Keep me updated on your progress, would be really good to hear from someone going through a transplant and reporting back. Best of luck!

    On 26 May 2015 at 16:18, Keratoconus Info wrote:

    >

  230. Shannon Powell says:

    Hi All,

    Just an update on my transplant from December 2013. I actually healed up very nicely and now have a scleral lens which allows me to see 20/20. Which took some getting used to- but are very comfortable. I am so glad that we all have this site to talk and have undergone the transplant so am here to support anyone in any way I can. Thanks! Shannon P.

  231. John says:

    Hi Shannon – Was your surgery PK or DALK?

  232. Shannon Powell says:

    Hi John,
    I underwent the PKP surgery. It’s been quite a journey.

    Shannon

  233. John says:

    Shannon I had grafts right and left 30+ years ago – both PK. Wore regular RGP lenses for years on them, then glasses. Then astigmatism got too bad so I’m now wearing sclerals which are great except one graft is starved for oxygen with them. I am getting it regrafted soon, and I only learned about DALK recently. I gather it has quicker recovery, less chance of rejection, but is more difficult. My new one will be PK, I believe the reason being that the first one was PK. I’m glad to hear about someone wearing sclerals relatively soon after PK.

    (Though I’ve been told I won’t be able to wear a lens on it for at least a year, which I’m prepared for. I’m quite accustomed to monocular vision. The only thing that’s just about impossible is driving at night.)

  234. Shannon Powell says:

    Jon,
    Is it common for your eye to starve from oxygen from sclerals? So far I only have the scleral in my right eye and I can wear it most of the day. My left eye does tolerate a soft lens for now, but also has KC, just not as bad. Did you get your left and right grafts around the same time?

    Best,
    Shannon

  235. Jon Severs says:

    I had hydrops two years apart, no grafts as yet.

    You’d have to ask a professional about how common it is, but certainly I know that the oxygen transfer through the scleral lens problem is an issue if you wear them too long – that “too long” can be different for different people, or even eyes in the same person! My elft eye does not show any ill effects of wear time but my right eye does. I wear my left 9am-10:30pm on average but my right eye 9am-7pm.

    On 28 May 2015 at 15:43, Keratoconus Info wrote:

    >

  236. John says:

    Shannon and Jon,

    My two grafts were done a few years apart (left 32 years ago, right 29). They *are* different. The right is fine, I can wear the scleral for 12+ hours, but I’m in the habit of re-wetting it in the afternoon to refresh the comfort and vision. At that time I put the left in. The left stays clear for just a few hours then slowly clouds up to about 50%. This is my routine.

    So, yes, it varies from person to person and even eye to eye. I just think the left was either not as good a graft to start with, or hasn’t survived as well.

    The surgeon I have been connected with to do a regraft in the left is very, very experienced – has written papers on studies of PK vs DALK in Africa for instance, and has done hundreds of grafts. I am confident of a successful outcome.

  237. Lorietta, Malta says:

    Hi again! I have a question for scleral lens wearers. Apart from having keratoconus, one of my corneas has a scar. Anyone like me? Cause now, I’m considering trying scleral lenses. And how do you find these lenses? From what I’ve been reading, they DO make a difference for our vision, considering that from my right eye, I do not “see” anything andI can’t wear RGPs anymore!!.Are scleral comfortable?
    Thank you once again for your support.

  238. Ravi Singh says:

    Hi Lorietts,

    I have scaring on both my corneas and I am using scleral lens for a year now. They have drastically improved my vision. You will be able to obtain them from an optometrist. Try and find one who has several year of experience in fitting scleral lens. They are very comfortable once you get used to them.

    The most problem patients have is in the initial stage, so it it very important that you are taught the correct method from the start. But once you get used to them it a breeze thereafter. Any you will notice colours that you did not see before.

    Good luck!

  239. John says:

    Lorietta – There are many posts on this thread about sclerals. I suggest you search “scleral” on the page and that will take you through them. There are advantages and disadvantages, but for many with KC and other corneal problems (myself included), they are the best solution. Good luck!

  240. Lorietta, Malta says:

    Thank you so much for your replies! Knowing that I’m not alone with KC (for the past 10 years now), gives me courage to move on. It’s very difficult sometime. When I used to wear the RGP, it was a total different world for me but now it’s been almost 3 years without it. Oh how I wish I can see clearer colours again!!

  241. Eddie Gonzalez says:

    I just finished reading the thread since it emails me all the threads shared. Well I hope it works out with scleral lenses. I’ve had KC for 13 years and I am still able to tolerate rgp but my left eye is getting so bad.

    >

  242. John says:

    Re: sclerals – I can summarize the cons and pros:

    Cons:
    – price
    – learning to insert (but you will get it fairly quickly if you are used to rgp’s)
    – risk of oxygen starving
    – relatively few practitioners are experienced fitters

    Pros:
    – comfort – completely unlike rgp’s – you hardly feel them – never a problem with dust, wind etc.
    – vision – most likely a lot better than rgp’s if your astigmatism is advanced
    – stability – if the fit is good they will *never* pop out or slide out of place

  243. Jon Severs says:

    That is a very good assessment John!

    On 1 June 2015 at 16:11, Keratoconus Info wrote:

    >

  244. Eddie Gonzalez says:

    Thanks for the aha

    >

  245. Eddie Gonzalez says:

    Thanks for the shared information and thoughts on sclerals. I’m driving up to see a new doctor on the 10 th and I’m hoping he can help.

    >

  246. NANDO says:

    Hi Lorietta,

    i too have scarring on both cornea’s. i have been wearing the scleral lens for about seven years. they are much more comfortable than regular RGP lens. However the fittings can be very stressful and take several weeks, especially if you have an inexperienced doctor.in Scleral lens. Be patient through the fitting process and you should be alright. Ravi’s advise is very true as well. Good Luck!

  247. Paula says:

    What a terrible experience you have been through. I’m wondering why they never offered you collagen cross-linking since it’s been around since 1998? I’m a Brit living in L.A. My son (17yrs) has been diagnosed with mild Kerataconus but his eye is deteriorating quickly. He is having epi off Collagen cross-linking next Monday in one eye by Dr Rabinowitz in Beverly Hills. He says he won’t have to wear any kind of contact lens after the procedure. I’m hoping it all goes smoothly.

  248. Hi Ravi..Thanks for your reply and I apologize for my late reply. Thankfully my corneas were above the requirement in terms of thickness. I believe it was between 450-550, I don’t really remember. What is very amazing is that my right eye (good eye) is actually thinner than my left eye which is EXTREMELY blurry. I had epithelium off CXL in India. Extremely uncomfortable procedure I must tell you. It is painful to keep your eyes open for 35-45 min plus those riboflavin drops can sting. But the epithelium healed quickly. It is very interesting what you say about moving off scleral lens but the fact of the matter is that the glasses which were prescribed to me just don’t work. I have inquired about kerasoft or novakone lenses. The practitioners told me straight up that they will not provide as good of result like scleral lenses and work in only early cases of keratoconus. I don’t even know what stage of KC I have! The thing is that if they let me try those lenses, I’m assuming they would have to charge me the fitting fee which is humongous! I will send more updates as I continue to keep in touch with the ophthalmologist who did my CXL. God bless everyone!

  249. Ravi Singh says:

    Hi Misal,

    They will not let to try on scleral lens because it has to be custom made for you. Sometimes it may have to be adjusted a few times before they get it spot on. Any yes, they are expensive in South Africa last year I paid R5500 for a pair. They can cost up to R10000 per pair here.

    It is important to find out, what stage your kc is! Since you have had epithelium off, you need to check to see if your kc has stabilized meaning it has not steepened anymore. If it has stabilized then you should try and get scleral lens. But if your kc is still advancing, them maybe you should wait before you get scleral lens.

    My reason for this is that the cost of these lens are very expensive and if your kc is still progressing then you will have to keep replacing them!

    Take care.

  250. Ravi Singh says:

    Hi Paula,

    I hope all went well with your son’s op yesterday. Please keep us informed as to his progress. I am quite keen to know if your doc is correct in saying “He says he won’t have to wear any kind of contact lens after the procedure”.

    I had a chat with my doc yesterday and she told me that the procedure is to stop the KC from progressing and has nothing to do with improving one vision.

    Take care.

  251. Lorietta, Malta says:

    Waiting for appointment to go for check up to try scleral lens in my RE. I feel so anxious and terrified!!

  252. Lorietta, Malta says:

    And I went into “Scleral” on this page. It is amazing….. I have seen the video clip about inserting and taking off the lens many times… You guys are wonderful and supportive. Thank you for just being there! Will keep you updated.

  253. Ravi says:

    Hi Lorietta,

    Don’t be terrified, once you have them you will see the difference it will make to your eye sights.

  254. Lorietta, Malta says:

    Hi! I went for the check up. Since I was prepared (via this blog), I did not find the scleral so frightening after all, when I saw it! My optemetrist was great! Process went smoothly. Found right fit after second trial. It was so good to have vision back in my RE after 3 years when I had stopped using my RGP (after 7 years). It was comfortable as well compared to RGP. Hope that it will remain the same when I will start wearing it day after day. Now waiting for scleral to be delivered for me from the UK. If everything goes ok, I will have kerasoft lens in my LE and scleral lens in my RE. It will be a miracle seeing from both my eyes after 10 years!

  255. Ravi says:

    Well done Lorietta, I am sure that everything will be fine and you will be able to see thru both eyes again, Let me know when you see ants again!

    Warmest wishes.

  256. Lorietta, Malta says:

    Now I am using Scleral in my right eye (kerasoft in my left) for the past 4 days. Vision is great although not yet perfect. Doctor is seeing me again in a couple of days. Yes Ravi, I can see ants and our cat’s fur on the floor! lol!
    Regarding insertion and removal, I am facing a little challenge but it is improving with every try. I think I will master it in the next few days.
    When I put them in the morning, I feel good but I start feeling pressure on top of my eye somewhere around two hours after. I’m on a trial of 4 to 5 hours with it right now.
    As soon as the wear time is increasing, I start feeling a tightness at the top of my eye. It’s like an irritation, sometimes, a burning sensation, it’s like as something heavy is pressing a portion of my eye. I’m using refresh tears but it only works for a few minutes.
    Could this be adaptation symptoms?
    And after removal, I feel a ring around my eye like a deep impression left by the scleral lens. This impression feeling stays for a while. After removal, I also noticed some redness but only once during these past four days. I’m not sure if this is due to the fact that I’m not used yet to removing the lens properly.
    Is all this normal….or? Perhaps Dr Nathan Schramm can answer me too please…..

  257. John says:

    Loretta – I’ve been using sclerals for over a year. Unusual redness or pain is not right. It sounds like the fit is not correct. I would cut back the amount you’re wearing until you see the doctor again. In fact, since you are seeing him/her so soon I would stop wearing them completely. I’m sure you’ll get a good fit eventually.

  258. Ravi says:

    Hi Loretta, I will concur with John. They should be very comfortable, as if you not wearing anything. I sometime, have to remind myself to remove them before I go to sleep. When I first received mine I also had a similar problem with one. Which went back for readjustment.

    Inserting and removing does take a bit of getting used too. I am not sure as to what technique you are using, but I use the plunger to remove and holder of which I have the base cut off to insert. With the base cut off I can see through and this helps me with the alignment when inserting.

    It should not hurt or cause you any discomfort. Speak to your doc, he will need to have them adjusted.

    warm wishes.
    ps now I can see how beautiful my cat is.

  259. Lorietta, Malta says:

    Thank you so much for your replies. Yes, I’m seeing my doctor in a week’s time. As for inserting the lens, I’m using the tripod grip and removing it with my finger. I’m getting the hold of it now.
    I have tried the plunger to remove, but I don’t seem to be able to take the lens out with it. I did apply saline before using it but it doesn’t seem to work.

  260. Ravi says:

    Hi Lorietta,

    Keep on at it and soon you will realize what all the fuss was about. Just don’t give up. Be patience.

  261. Erin willis says:

    Thank you 4 sharing your journey…I too have or had kertaconis in both eyes and the reason i say had is because I pretty much walked the same hell on earth as u did, except. For one MAJOR decision unlike yourself I chose the corneal transplant and now I sit here two years later with a glass eye and left wye needing the transplant. Great choice in not getting transplant. My left eye wold have to hump out of my socket before i would even consider a transplant. Thank you, good luck to all.

  262. John says:

    Erin – I’m sorry to hear you had a bad transplant. I don’t know what happened to it but it is by far the exception. Corneal grafts for keratoconus have a success rate well over 90%. I have had grafts on both eyes for over 30 years. At the time they were the best option for advanced keratoconus, and I have been able to lead a normal life thanks to them. And the state of the technology involved has only improved over the years. As it happens I am currently waiting to have one of them redone.

    As I say I am truly sorry you had a bad experience. And there may have been extenuating circumstances that led to the failure. However I don’t want people to have the wrong impression about the general efficacy of corneal grafts. The important thing is to find a surgeon who is adequately experienced with them, and to take very good care of them and yourself.

  263. Lorietta, Malta says:

    Yes the fit is too tight. Lens back for adjustment. Have a few questions….

    1. When you remove your lens, do you still have saline water in it because I don’t recall having any left?
    2. Do you wear your lens from morning till night without a break? And is this how it should be?
    3. Do you use artificial tears or saline water to wet / refresh your eyes during the day (without removing the lens)?
    4. If I remove lens during the day for a break, do I need to clean it like nighttime or just put in saline water and put back in?

    Many thanks for your replies….

  264. Ravi says:

    Hi Lorietta,

    1. It all depends as to how long I have then on. On shorter wear it still has, and on longer wear it does not have saline.
    2. I do wear my lens up to 16 to 18 hours a day. On a good day I have a few changed and on a bad day I have multiple changes. I do not rest my eyes between changed I just refill saline and reinsert. It will be different from one person to another.
    3.I use to, but stopped, I used my own home remedy apple cider vinegar diluted with 50% water. This stops the itching, clears my eyes, reduces protein buildup and lubricates. It is also much cheaper. This helps me I am not asking you to try this because it has not been medically tested.
    4.Yes, they should be rinsed when ever you remove them. And properly cleaned at night. I give mine a good clean every morning and night.

    Warm wishes
    Ravi.

  265. Lorietta, Malta says:

    Thank you Ravi…. 🙂

  266. Ravi says:

    You are most welcome Lorietta.

  267. Maggie says:

    Hii Everyone,

    Glad to find a site which talks about KC. I was diagnosed with KC in the month of April this year. I have mild case keratoconus and had almost 6/6 vision when diagnosed. Now the vision in my right eye has deteriorated to 6/9. All in all i have good vision. I am 28 and the doctor said the chances of it progressing at this age are less. My problem is that i need to have 6/6(20/20) corrected vision for my profession(I am a pilot ). I wanted to go for C3R procedure but heard that the vision can deteriorate slightly after the surgery.

    It would be really helpful if anyone could answer the foll questions

    1.I want to know if anyone of u have seen progression after the age of 30 ,if there is progression has it slowed down after 30.

    2. Is C3R procedure a good idea for such mild case KC? How long does it take to recover from the surgery/procedure and get ur normal vision

    3. Till which stage of KC can the eye sight be corrected to 6/6 or 20/20

    4. What are the options that i have to correcting my vision in early stages

    I know i am complaining too much for such mild case keratoconus. But i have struggled for the last 7 yrs in the field of aviation and recently landed a job in a commercial airline. Though i have good vision i am afraid that i wont be able to continue in my profession because of KC
    Any help would be highly appreciated

  268. John says:

    To the aviation professional (sorry didn’t see your name) – I highly recommend scleral contacts if:
    – you can tolerate inserting and wearing contacts (actually you don’t feel them at all and they virtually never fall or pop out)
    – you can afford them (they’re expensive but worth it if you can)
    – you can find a practitioner experienced at fitting them

    For the type of vision distortion that KC results in, the scleral lens is ideal.

  269. Louise says:

    Hi Maggie
    First off, well done you for being a pilot! What an amazing job that must be. So if your 6/9 you are in the very early stages right? I would definitely recommend the cross linking, because you can’t predict how your eyes will progress from here. My KC was mild through my 20s but as soon as I hit 30 it was a downhill slide. By 38 I was 6/120 in my right eye and I’m about 6/50 in my left. So I don’t want to make you feel like there’s no hope, but I was a bit of an exception to the rule. Crosslinking will halt progression so probably an excellent idea. I wish it was in Oz ten years ago!!!!!!
    Good luck 🙂

  270. Ravi says:

    Hi Maggie,

    I can only imagine the anxiety you are going through. My KC has only now stabilized at age 45, I had KC from my early 20’s. I will also suggest cross linking epi on. This with stop the steepening of your cornea only. You will still need scleral lens to obtain 20/20 vision.
    Warm wishes and congrats on your new job.

    Ravi.

  271. John says:

    I should add that regular rigid gas-permeable (RGP) lenses are also a much less expensive option. I used them for decades with KC, both before and after grafts.

    But there is no comparison to the comfort and stability of sclerals. They just require more money, and an experienced fitter.

  272. Maggie says:

    Thanks everyone for the reply.

    I was suggested C3R procedure , but after doing a brief research I realised that it would take one year for the eye to heal completely and the sight to stabilise. I was also told by my doctor that vision after the procedure might deteriorate in the case of C3R. So i am looking at other options too. I guess i will consider scleral lenses as an option.
    I am scheduled to see the doctor this weekend . Will be getting a topography done to see the progression. Hoping for the best

    Thank you guys.

  273. Maggie says:

    At which stage of keratoconus do u start seeing halo’s.
    Is there anyway of getting rid of them

  274. Lorietta, Malta says:

    Hi Maggie
    Welcome to our world! You are not alone! RGPs and sclerals help a lot not to see halos. I have worn RGP for 7 years, then had to stop as it became intollerable and now I’m in the process of wearing scleral. Sclerals are better than RGP for comfort and vision.
    I have known I have keratoconus for the past 10 years and I do not remember when I started seeing halos for the first time.
    I am 40 now and sincerely, during the past 10 years my vision deteriorated. I am hoping that it will stop progressing now that I have turned 40 (almost 41). My advise to you would be: definetely do something if you have an option to stop the progressing.
    I am a learning support assistant (teacher assistant) and I also need my eyes for my job. More whatsoever, I can understand your pre-occupation with regards your profession!! I wish you the very best of luck!

  275. Jamilla says:

    Oops I think I address Malta instead of Maggie. Sorry. All the best everyone. Maggie welcome! !

  276. Jamilla says:

    Hello Maggie, Hello to John, Ravi, Louise,Jessica, Lorietta, Malta and ALL our dear, dear supporters. I have been doing very well since my regraft (right eye) surgery last October 26th 2014. Actually I never had any complications or discomfort since that procedure.Everything as gone like clockwork. I’m actually seeing clearly out of the left eye which as I said before was a blur and had a red hue. Not quite sure of the measurements but I can read to the 2nd line and to the fourth line with the pinhole!! My peripheral vision is very good! The sutures are still in (precautions due to it being a regraft – reduce chance of rejection)

    Maggie a special welcome to you! I do understand your insecurities very well. You can read more about my journey in my entry made on October 25th 2014 on this site!
    My eyes continued to deteriorate after age 30! Actually had my second graft done (on my left eye) at age 39!

    You have been getting some very, very good advice here. Please link up to a GOOD Ophthalmologist and trust your 6th sense!! That’s my advice to you. Everyone’s experience is not exactly the same with KC, but we can certainly learn a lot from each other, support each other and give hope to each other! Science is advancing continuously so we always have hope my friend!

    I have come a long way! We have come a long way! You will go a long way my dear! Hope to fly with you soon!!!!

  277. Maggie says:

    Hii Everyone,

    Been to the opthalmologist yesterday. The topography revealed that my KC is pretty stable.That’s good news for now.He suggested that i wear hard contact lenses for correction. I’m yet to visit aviation medical examiner. Thanks guys for all the support

  278. Lorietta says:

    Hi again! This is my fourth day wearing altered scleral. Inserting is no problem at all, I still need to master removing, although I succeeded using the plunger. This procedure is so much smoother…
    However, yesterday, I experienced cloudness for the first time. I recall touching the side of my eye unconsciously and this moved the lens a bit. Could it be that air went in and caused the foginess? Worse still, I was out and I could only remove the lens when I went home which was about 2 hours afterwards I noticed the cloudness. Could this cause damage to my eye?
    Having mentioned this, this is my worst fears…. that in an emergency, I do not have an adequate place where to remove my lens, put saline and insert back again!
    Thank you once again for your help and support to all!

  279. John says:

    Hi Lotietta – Sometimes I have to insert 2 or 3 times before it will stay clear. I am not sure what causes this because I have it full of liquid and I seem to insert it properly. It always eventually gets in right. This doesn’t happen all that often though.

    Also, I wear them upwards of 12 hours a day, and I find that if I don’t clean and reinsert in the afternoon, they get less clear. Not sure but this may be air getting in, or the liquid itself clouding. Your cornea does generate metabolic waste and this can cause that.

    So I have developed the habit of always having my solutions with me. I found a small zippered case that is perfect. And as I got more used to removing and inserting I have become able to do this in public washrooms where I’m no longer self-conscious about it. I always wash my hands well first and have something safe for the lens to fall on. (I remove and insert without a plunger device.)

    I would not worry that you have damaged the cornea unless you feel pain immediately. If this happens it probably won’t be serious though. The epithelium (outer layer) heals relatively quickly. But you should leave the lens out for a few hours or until it feels comfortable again.

    It becomes very handy to be able to function with just one lens in. You might even want to practise it!

    John

  280. Ravi says:

    Hi Jamilla,

    I am so happy that you are doing well. Your words are inspiring.

  281. Ravi says:

    Hi Maggie,

    That good news. Well wishes.

  282. Lorietta says:

    Hi John
    Yes I already go around with a zippered case. I’ve been doing this for the past 10 years. Now I will also include a small magnifying mirror and a reading torch which I will find handy just in case there is not enough light wherever I need to remove and reinsert lens! I do hope that I become more confident and less anxious in what I’m doing though because this is making me go craży!
    Having said all this, I want to thank the Lord Jesus, and his mother Mary for giving me a chance to see again with both eyes after 10 years (I had rgp in right eye only for 7 years, then switched to kerasoft in left only) Now I’m wearing a kerasoft in my left eye and the scleral in my right eye. Vision is excellent, it’s like a miracle for me!
    Finally I would like to thank all of you supporters as always….

  283. Carol Mizzi Peplow says:

    Who is your doctor Lorietta ? I am from Malta too and have transplants in both eyes abd am currently waiting for a transplant again in my left eye. I ve been trying hybrids quite so long but next month I will try the scleral.
    Carol

  284. Lorietta says:

    At last! Someone from Malta!! I thought I was the only one on the islands as I am from Gozo actually! Not that I want anyone else to suffer from this disease, but at least I know that I’m not alone from Malta! Did you see my recent posts on this blog? They might help you.
    Anyways, I’ve been visiting Justin Kadurand at Solo Opticals, San Gwann for the past 10 years and he’s excellent!

  285. Lorietta, Malta says:

    Carol, and you can click on scleral at the top of this page for more info and experiences about scleral lenses….

  286. Carol Mizzi Peplow says:

    I go to Camilleri Optician Valletta at Mr Camilleri. Do u have fb? If so send me a friend request Carol Mizzi Peplow. Or else send me an email on cmizzipeplow@gmail.com maybe we can meet one day.

  287. Lorietta, Malta says:

    Yes, surely will!…. I’ve been waiting to share my experiences with someone Maltese for the past 10 years! I will find you on fb. It’s together with my husband. Frank Lorietta Buttigieg. And my email is loriettab@onvol.net

  288. Alex Mann says:

    This is a really useful blog – I’m at RGP stage at the moment with piggy back soft lenses and am hoping that it will stay as it is now. I’m 37 nearly 38 and am told that treatments such as KXL would not achieve anything more than the natural aging process has done already.

    I totally relate to the variability of the condition – some days my eyes are great, others awful – and I too have a good eye and bad one. My left lens is much steeper than the right.

    I’m interested in your choice not to have a corneal graft however as I have heard from other sufferers that it not only improved their vision dramatically it has also ensured Mlno recurrence of the condition.

    Also the hydrops part I think I may have had this in my left eye but it healed much quicker. I got a sharp pain in my left eye followed by clouding and then a but if a dull ache. The clouding however passed the same day and whilst I’ve had aches since I’ve not had the same clouding. No one has suggested I’ve had hydrops but I do have very clear striations on my left lens which are marked. My optometrist has also mentioned scarring.

    Anyways once again – thanks for this. It can feel rather lonely living with this and whilst I rarely get down – there are far worse things that can happen – it is nice to know someone else knows what is like.

    Best wishes and keep on blogging,

    Alex

  289. Lorietta, Malta says:

    Hi again! do you think it is okay to wear scleral lens for the whole day if it is comfortable? This might seem a stupid question but ….. how do you know that you need to remove, rinse and refill with saline and insert back again (if it’s not clouded)? Because sometimes, I’m so busy during the day that I forget all about the lens in my eye…. I hope that I’m not doing any damage by not refreshing it!…

  290. John says:

    If it’s comfortable I would say yes. If vision seems a bit cloudy or unfocused, then clean, re-wet and re-insert. (I do this in the afternoon, it seems to help all around.)

    If you get some cloudiness occurring that doesn’t go away after re-inserting, then cut back your wearing time. If this persists or gets worse, see your ophthalmologist or optometrist. Your cornea may be being starved for oxygen.

  291. Lorietta, Malta says:

    Thank you for your replies…. I’m having a check up with my doctor in a month’s time (after 6 wks weartime). But in the meantime I wanted to share with you guys…. Hope I do not have any more issues for the time being….

  292. FI says:

    This condition is a reality check… I just turned 20 and then BAM I have KC. Actually my vision started to deteriorate as soon as I got in college (at around 18). My condition like most is bad in one eye but it’s progressing in my other eye now.

    I am a student at LSU and I worry about how KC will further impact my performance in school. I already struggle with simple tasks like taking notes and reading detailed diagrams. It has also affected my confidence and that’s what’s really frustrating.

    My doctor which is said to be one of the best in New Orleans is hesitant to recommend me for a disability program at school because she thinks that the lenses will suffice. However with the nature of this condition being that it changes regularly I am concerned.

    I had been seeing well in my left eye so I was OK at first but now my left side is worsening!

    What should I do?

  293. John says:

    FI – see if you can find someone in NOLA who has fitted scleral lenses a lot, and get in to see that person. There are also regular rigid contacts but vision and *especially* comfort are far far better with sclerals. If you have no experience with contacts it’s best to get into them somehow, and sooner than later.

  294. Jenny says:

    Thank you for sharing your journey . My son was diagnosed with kc 4 years ago. He’s now 25. He was diagnosed when he had a routine check up and was referred to my local hospital. Like many others I came out confused . I got the impression from the consultant that he didn’t know much about it. Anyways he prescribed glasses and then we went to my local opticians and spent £400 . after serving the net I was still unhappy with my visit to the hospital so I went to my doctors to get referred to a specialist in kc. I made an appointment with a private optician and saw ken Pullman. He explain the disease in length and tested my sons eyes and told me he was only at the early stages. He also advise me that the glasses that we spent £400 pounds would not help him to see. He fitted my son with rigid lens and then referred us to Moore fields hospital. To date my son is able to get on with his life and has regular checks at moorefields and see ken and his private practice. All the best to everyone and their family .

  295. karl offers says:

    Really enjoyed reading the various stages of kc. I have suffered from this condition for a number of years. I have tried various types of lenses including scleral. I find that the latest system I am using to be quite successful. I wear a soft lense and a RGP in both eyes. I believe this is called piggy backing. I get comfort and vision. The only problem is as I get tired my eyes are very itchy and I rub them until I make them sore. Can anyone suggest a cure to this itching. I also have blurred vision when my eyes are tired. This is really frustrating , as I have to take the lenses out and then watching TV or reading is a no go. Hope to hear about someone s experiences and cures. thanks

  296. Chris says:

    Hi Just found this page I am 48 now and it first got me at the age of 41. The left eye got it forst the right eye got it at 44 I have been told. I cant do the collagen cross linking do to corneal scarring. They said the UV light can’t do its thing through the scarring. I hope my condition does not worsen and the scleral contacts work for me for the long hall. For now I have been using eye glasses for correction. Even the non corrected ones worked wonders for my eyes when they were fitting me at the eye DR.

  297. John says:

    Good luck Chris! I’ve been on sclerals for a few years and I believe they’re the best if your corneas will tolerate them. In September I had one of my 30-year old grafts redone and am waiting for enough healing so I can put a scleral on it. Meanwhile I’m one-eyed with the other eye, which is fine – only night-time driving is a little challenging.

  298. Chris says:

    Thanks for the wishes john. I hope the best for you on the new graft. My biggest concern with the sclerals is some of the noted infection and clouding issues people get with them. I guess they are high maintenance items but worth the clarity in vision. I tried the hybrid ones (synergyeyes sp.) ones those were horrible and my eyelid would catch them with every blink. What are other people experiences with long term use sclerals….does a time come when they cant be worn anymore and transplants become the only option. A couple of people at work hated the labor to put those things in and went the way of transplant. My left eye has stabilized for last 4 years… my right eye which was fine 4 years ago is rapidly catching up to my left eye in last year (still tolerable without glasses) So it looks like this disease can happen in the mid to late 40s too.

  299. John says:

    I was just thinking that it would be great if there were a way to test sclerals to see if your corneas can tolerate them, before going to the expense of ordering them. But I don’t know if that’s possible – the issue with my left was hypoxia (oxygen starvation), which I gather is partly a function of how much liquid is in there. So if you have KC or astigmatism of a degree that requires high “vaulting” in the lens interior, there may be more liquid and the effect of that wouldn’t be known unless you had your custom fit. Still, maybe . . .

    The inserting is not easy at first, to be sure. I think it helps if you’ve had experience with contacts already and so are less timid about it. When I started with them I hadn’t worn contacts for about 10 years. It took me a month or two to get used to it but now it’s easy. I know people use the little suction holders but I’m good with my fingers. Cleaning at least once a day is absolutely imperative. I also find that re-wetting half-way through the day is necessary. At first I felt that all of this would just be too much hassle but now it’s part of my regular routine, and the vision makes it all worth while.

  300. Chris says:

    Well at the eye Dr for the big contacts they came in. So far not happy the ones for me have wise vision then the fitting trial one did. And there impossible to get out it seems they really sick on to your eye. Depressing day

  301. Chris says:

    Also trying to line of the markers on the contacts to make astigmatism is properly corrected is not fun

  302. Lorietta, Malta says:

    Hi Chris and good luck with your sclerals. They make wonders to your vision. I’ve been wearing a scleral on my right eye for the past four months now. The first month was really difficult for me, especially to take out. The plunger made miracles and today I’m quite confident in inserting and getting out with no problems or issues whatsoever

  303. Chris says:

    does anyone else have alligment markers they are suppose to use on the Contacts before putting them in. those markers are really hard to see.

    Thanks for your reply Lorietta

  304. Mason says:

    Do any of you struggle with tension headaches on your fore head? I notice them sometimes and I think there because of KC please respond

  305. John says:

    Mason – I can’t imagine that anything physically connected to the state of your cornea would cause headaches. More likely it’s because of straining to maintain good vision, because of keratoconus. That can definitely cause that kind of thing. Especially if your wearing rigid contacts.

    I think it’s important (especially for us) to have relaxing time for your eyes at some point in the day. No driving, reading, computer or TV. Take a walk where you can enjoy your surroundings and the exercise without having to see things clearly. Or just talk to someone or listen to music. We don’t get enough of that sort of activity, regardless of the state of our vision!

  306. Muhammed Ali suslu says:

    Yes, I have kc only on my left eye and I alwayshave headhache on the left part of my head just around of my left eye

  307. i want address of most apt doctors

  308. Kate says:

    Thank you for this really informative and inspiring site. I was diagnosed with keratoconus in December when my optician found a large change in my prescription during my regular check up. He had previously diagnosed me with a mild astigmatism in my right eye two years ago and assured me that at my age it would be ‘stable’ and wouldn’t progress further (I was 32). The prescription is now changing rapidly and my opthamologist is recommending we go straight to CXL at Liverpool. She has also diagnosed keratoconus in my left eye, although at the moment, this is not problematic.
    I can deal with this, I have three young children and let’s face it, whatever the doctors think the best treatment options are, I’m going to take them.
    In the mean time it’s the other symptoms that are causing me a headache (quite often literally). I have been having real problems with vertigo-like symptoms, nausea, tension headaches and silent migraines; for me that’s auras, pins and needles, and muscle tremors but no headache. I am also fainting quite regularly, which has been quite frightening for the children. The opthamologist has informed me that there is no possibility that these symptoms can be caused by keratoconus, so in some ways it has been reassuring to read that others have experienced similar symptoms.
    Something that I have found that helps me is taking a daily antihistamine tablet. I also suffer from various allergies and I never really noticed how often I rubbed my eyes. This has really reduced my need to rub, and I’m noticing less eye strain at the end of a busy day.
    Right, I’m off to buy some decent sunglasses.

  309. Sara says:

    Hi Kate,
    Reassuring to know that antihistamines work for you as well. They work for me, but I have switched to using antihistamine eye drops, and have stopped taking the tablets. I think it’s better to target the region that needs them. I have been using them as needed for at least 5 years now to manage allergies. I seem to my eyes rub much less frequently now -or my teenager would comment! Wish you the best of luck with the management of your keratoconus. Sara

  310. Jon Severs says:

    How interesting that you both have allergies. I suffer really badly with allergies, too.I wonder if there is any proven link?

    On 16 February 2016 at 13:28, Keratoconus Info wrote:

    >

  311. Sara says:

    Hi Jon, I have not read of any proven link, but it is cited as an ‘environmental cause’ here: http://www.nkcf.org/what-is-keratoconus/ and elsewhere. I have been told by my specialist that it ISN’T so and we all rub our eyes! I’m no expert and what I’ve read doesn’t indicate proof, but the drops help and I rub less 🙂

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  314. kevie41 says:

    2 weeks ago I had great vision no glasses nothing) eyes were sensitive to light at times but never really thought much of it then suddenly my right eye watered up an theirs a cloud blocking my vision can barely see anything ) i was diagnosed with corneal hydrops i am 20 & it was in my right eye ) doctor has recommended cross linking for my left eye since i have the disease in both my eyes) Anyone that has done cross linking lose vision for a long period of time how does it work exactly ? He told me that wouldn’t be able to see well from that eye for about a week Goodluck to everyone out their 🙂 also side note- I was told by my sister I have a wondering eye in the one I have hydrops in would that be something I should mention to the specialist maybe? Thanks

  315. Jamilla says:

    I have had corneal hydrops actually a couple years after my first corneal graft in my right eye. I was medically and legally blind in that eye. It cleared up after 6 mths. The sight did deminish though but I could still see to function sufficiently. It did eventually loose focus or wandered or became ‘ lazy’. That was in 1990. I am now 54 and had a regraph on that eye in October 2014. I’m seeing in the eye. It helps my peripheral vision. But the eye is still wandering.
    I had a graft in 1997 on my left eye and that’s working fine although I do wear gas permeable contacts for detailed work. All the best in your full recovery.

  316. JAsdeep singh says:

    hello brother i have done my C3R in my right eye before 15 days but my vision is not clear plz tell me when is vision clear

  317. kaine clinton says:

    It was great to stumble upon this post. I also can share my experience in filling forms. I’ve forgotten the last time I filled out a form on paper. I mostly use PDFfiller to edit. You can easily fill NY DTF IT-370 here https://goo.gl/jOFJIT.

  318. Brent says:

    This was nice to find this forum.
    I’m 27 and was diagnosed when I was 12. I was fitted with RGP lenses straight away. I can still remember being able to see my Mums face properly.
    The first few years I suffered pretty badly with discomfort, ulcers and I lost a few lenses along the way too. I was probably 16 before I saw an actual proper specialist on kerataconus. He was able to fit the best lenses I had had so far. Basically up until approximately 12 months ago, I didn’t really have any issues, a few ulcers etc and requiring new lenses as my eyes changed. One set of lenses lasted me almost 5 years. I generally always wore one lense as I found my vision adapted ok to one lense, and I didn’t want the complication of 2 lenses.

    Lately, I have been having trouble with discomfort, with my eyes turning very red and inflammed after a few hours of wear. I also developed a very visable yellowish coloured ulcer on my right eye, just to the left of the lense. With a lense in my eye it feels as though a cold strong wind is being blown in it. Hard to explain and something that I hadn’t had trouble with before. My current optometrist hasn’t been of much help so far, only going as far as to tell me that I need to clean them more thoroughly, although I already clean them very thoroughly every night and clean or replace the case frequently. I was hoping somebody may have some advice they could share?
    Thanks

  319. John says:

    Brent – I think you need to see an ophthalmologist as soon as possible.

  320. Katrina Kowitz says:

    I am 52 years old and first got diagnosed with
    Keratocinus when I was 12 years old. I had to go for a eye test at my school. Much surprise by the school nurse when I could read the top line of the eye chart. My parents took me to a eye specialist and he made me a pair of hard contact lenses. I tried putting these in both my right and left eye for about 6 months. I was in year 8 and I just couldn’t see the benefit of wearing the lenses. So after many fights with my mum I threw the lenses in the bin.
    I completed high school not really being able to see much at all. My junior certificate summed it up by stating that I excelled in the subjects I liked and didn’t try in the subjects that I didn’t enjoy. It should have said that I excelled in the subjects I could see or work closely with the books or touch typing. I did really well with maths , typing and music. English,science I failed miserably because I can remember these subject had a lot of board work and science was a lot of projector work. I couldn’t see any of it.

    Anyway I met my husband in 1984 and much to his surprise he learnt very early in our relationship that I didn’t gave real good sight . He quickly arranged an appointment with his eye doctor. During the testing he was amazed and said how did she walk through the door. She is so blind. He explained that my vision was like looking through the old coke cola glass bottles . The eye doctor then made me a hard contact lense but only for my left eye as he did the right eye was to distaughted .

    I wore the hard lense for approx 10 years until one day when I was at work my left eye rejected the lense.

    This left me virtually blind. Because now I was used to sight and now I could only see colour.

    I now had to have my first graft . In 1992 I had my first graph. Then in 2001 I requested togave my right eye done. I kept thinking how scared I was when I had no sight. I pretty much had lost my sight for approx 6 mths all together and by now I had 2. Kids aged 2 & 5. I had a lot of trouble with my second graph that went on for about 5 years.
    A very long story there – had to give up my job for 9 months- all I can say there is thank god for Chinese medicine.
    My vision today is not good . I wear glasses and I work in a bank. Fellow workers don’t really get it. Some days I can’t see much at all and then other days are good. But hey I am lucky to gave sight and I thank god everyday for this. I gave a great job and the best family.
    Cheers Katrina

  321. judy says:

    wow..i feel hope in your story..i hope my eyesight gets back to normal because i am 23 years old with keratoconus and i havenot gone fir any doctor cause of financial issues.i hope to get better by God’s grace.thanks for sharing your story

  322. Samantha Pillay says:

    Hi Judy,
    Stay strong. Just don’t rub your eyes and try to not get anything in them including makeup. I wish you well and hope you get treatment as needed. God’s grace be with you .
    Take care.

    Katrina your story is very touchy. Medicine has progressed over the years but there is still so far to go in the treatment of keratoconus. I wish you too all the best. I totally understand how hard it is to explain the issue to others.
    Take care

  323. Kamil says:

    Hello . Anybody know how much are the sleral lenses or semi-scleral in europe?

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