Welcome to Keratoconus Info

Don’t worry, your contact lenses have not broken. You do not have to go for another laborious meeting with your optician. You do not have to re-read the eye chart and make outlandish guesses at obscure-looking letters on a row far beyond your capability. You do not have to explain to work, once again, that your eyes are shaped like rugby balls, not footballs, and that it is all your cornea‘s fault. For the picture above is a mock up of how we see. We being those suffering with Keratoconus.

This website documents my own experience with Keratoconus. I am a 12-year veteran. I have fought many a battle and have the scars (a-hem, in-joke here) to prove it. My hope is that by documenting my ongoing treatment, progress and experiences, other people suffering will not make the same mistakes I did, will perhaps learn of an option they hadn’t thought about, and will know that someone else is going through it.

It is technical where it has to be, with priceless nuggets from some of the world’s leading doctors who reside in Moorfields Hospital London, but mostly this website is anecdotal, a scrap book of things I have learnt, been told or experienced.

I hope it proves useful and please feel free to leave comments anywhere on the site. Use the tags above the picture, or click on the links below, to navigate to the different pages and take a look on the right-hand side of this page for the latest news on Keratoconus.

  • About: Keratoconus explained simply. With a snazzy graphic to boot. And pictures of eyes.
  • My Experience: A comprehensive rundown of my experience with Keratoconus.
  • Lenses: The contact lenses I have used – assessed and rated
  • Hydrops: There was next to nothing about corneal hydrops on the internet. Now there is.
  • Graft: Corneal Grafts, or transplants, are an option for the later stages of the condition
  • Scleral:A page dedicated to an under publicised lens option for Keratoconus


NOTE: This website is no longer regularly maintained. Please see the comments section on each page for latest information from people who have Keratoconus and the treatments that have been made available to them. 

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13 thoughts on “Welcome to Keratoconus Info

  1. Lisa McKay says:

    Hello there I suffer from Kerotoconus too. I have been wearing scleral for the past 7 years no problems until recently. Have you ever had red swollen veings, runny nose and hay fever like symptoms which make it difficult to wear the lens

  2. Jon Severs says:

    Yeah I do get those symptoms but hay fever medication tends to sort it!

  3. MsA says:

    First of all! Thank you so much for creating this site! Thank you! Thank you! Thank you!

    I have a very close family member who is suffering from Keratoconus and I feel like you are helping others so much by being candid and sharing your own personal experiences with what you have learned about it. This site is a real big help and educator to anyone who has Keratoconus themselves or knows someone who is suffers from the disease.

    Keep up the great work! I appreciate you! 🙂

  4. Jonathan Drane says:

    It’s very difficult to summarise my circumstances. I have bi lateral KC and choose to live life unaided, despite medically having a marked improvement of vision with Contact lenses, I don’t consider this to be improved vision, hence my decision to live unaided. We all know the unfairness in the Victorian substandard assessment that decides our visual competence in a stable static environment immediately recorded in a passing moment, because it’s not like life is anything but flowing, unpredictable and a constant changing dynamic.

    The difference between my case and many others is that I’m diagnosed with severe adult ADHD and highly medicated in order to suppress the symptoms. Whilst I’m sure some people disagree with ADHD validity, and blame it on bad parenting…. (I assure you I have two fantastic supportive parents and two totally normal achieving siblings). Unfortunately having ADHD I solely rely on routines and consistency in life other wise I go of the rail. Obviously having KC and also extremely differential eyesight under contact lenses, consistency goes out the window. We then have the dilemma of ‘improved eyesight’ and mental health. To simplify, what’s the point in having *improved eyesight if the mind behind the eyes is depressed.

    Eyesight is purely subjective to the individual and their interpretation.

    I use to be good at a particular sport, I dreamt of competing in the London and Rio Olympics, my eye condition destroyed the reality of this ever happening.
    I’d like people to consider my situation and tell me if they think I’m right to fight for International Paralympic Classification and potentially start a campaign to compete at the Rio Paralympics. I feel it’s unfair that there are people with debilitating eye conditions that don’t get the fair opportunity to draw ability out of disability due to inadequate assessments.

    Please share your thoughts….

    *improved eyesight by outdated, inadequate assessment.

  5. EA Garcia says:

    This site is so helpful been looking for information on Kerotoconus for several years I was diagnosis 8 yrs ago and my condition went from mild to severe within these 8yrs I am severe nearsighted in both eyes. It’s difficult to see on a daily basis as of 2yrs ago. I am currently going through a second hydrop on my right eye last time this happen was in August of 2011 I’m not sure how common it is to have two hydrop on the same eye within a 3 yr span. I have been recommend to go through with a transplant on my right eye only for now cause my left eye is working ok and hasn’t had any major problems like my right eye. I suffer from allergies so that doesn’t help me when it comes to wearing contacts not sure how I can calm down the eye allergy to help comfort levels on wearing my contacts. At this point I have not medicated my right eye as I’m not to sure what products to buy to soothe the problem. My experience with KErotoconus has been a rocky one with eye exams and RGP contact lenses that are difficult to wear at times. The contacts are so small I end up losing them and having to pay a hefty amount for a replacement. And the changing of my fit and power have been an issues as well. It’s hard to go a full day with my contacts and not being able to see with glasses limits me on a daily basis with work and social life. I am commenting basically to see if anyone can give me info on how to properly maintain this contrition and contact wear so that my business and social life can be a bit better Thank you in advance

  6. Jon Severs says:

    Hi there – glad the website has been useful. It sounds like you need to look at new lens options. I would ask your doctor about Sceral lenses. I had two hydrops too – it gets better!

    In the meantime – I found wrap around sunglasses worked really well for computer work and when I had my hydrops in one eye I cut out some cardboard out to stick in the sunglasses lens and block the hydrops eye.

    As for the lenses you have currently – do you use lubricating eye drops? These might help with comfort


  7. EA Garcia says:

    Thanks for the reply I am currently going through a new contact trial I went in for fitting last week the new contacts are 5x bigger than the ones I have now they cover my whole cornea instead of just the pupil part. I’m not to sure these are the same contacts your talking about. I’ll find out more about them when my fit comes in. As for lubricating drops I use Baush and Lamb preservative free fresh tears but I have to go through the hassle of removing and cleaing my contacts when I apply the drops every time

  8. Anna says:

    hello.this site is really good.my age is 24 and i have unilateral keratoconus.its very loborious to wear hard lens.i really want a solution and i dont want to use contact lenses.is there any other treatment like intraocular lens.plzzzz reply.

  9. Jon Severs says:

    There are soft lenses available but they tend to only work for less severe keratoconus.

  10. Paul says:

    Just reading through some of the comments and I myself have adhd and kerataconus and some times wonder if my kerataconus be the cause of my attention issues and my quickness to react (impulsive) because not being able to focus my eyes correctly for years probably subconsciously makes me an irritable person who knows would love to see a study being conducted some day if not all ready done about eye conditions and attention span and mental health

  11. Thoko Phiri says:

    Hello, thank you for the website you are doing a commendable work! My name is Thoko i am from Malawi, I was diagnosed with KC in both eyes in 2001, I have been wearing RGP contact lens since 2002. In may2014 I went for a re fitting after I lost my lens but they told me that I can’t use the RGP any more. They said that the KC has advanced much and that the cornea is very thin that it can break due to the pressure of the RGP on it, but before I lost my lens I was able to have them in my eyes for more than 12 hours without any major problems only dry eyes sometimes . So they referred me to an eye doctor this coming thursday,here in my country if the RGP fails the next option is transplant and it can not be done here in my country its either south Africa or India and its very expensive. currently am not on any medical plan, I am so worried.

  12. Tailor Rue says:

    Hello, I’m from Adelaide, Australia and have KC(over twenty years). Rigid contacts for fifteen years now, and have success most of the time. Over the years I have noticed continual increases in costs for contacts and visits, esp the last two years-seems to have increased by 40% alone. Luckily I work and can can pay, however always wonder how low income people manage? I would find it very distressing if people in this country are going without regular appointments/and or correct lenses etc.
    Just stumbled across this website at 12.15am-vision is very poor without lenses-will come back another time to have a good read. God bless you for this fantastic site!

  13. JerryJem says:

    Я слесарь-сантехник, работаю в СПб, выполняю работы по замене или ремонту смесителей, сифонов, фановых труб, монтажу-демонтажу унитазов, ванн, болеров и многое другое. Выезд на объект, только в окрестностях Санкт-Петербурга. Цены не завышаю, так-как работаю без посредников. Если объем работ небольшой, и за час управлюсь – то тариф 500 рублей… если объем работ достаточно велик, то по обоюдному согласию с заказчиком. Еще я, произвожу разводку труб горячего и холодного водоснабжения по квартире (металлопластик или полипропилен, на выбор заказчика). Звоните, не стесняйтесь, мои цены, вам понравятся! Тел: 89522848727

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