UK Keratoconus Self-Help and Support Association

Hey guys,

I have been diagnosed with Keratoconus for around 8 months now and the NHS are already becoming a pain in the backside for me. The staff I see, seem clueless on how to deal with me (even my uncle, who is owns an optician, knows more than them) and the RGP that I have been using are literally unberable. I wear them max 3 hours, can't do them any longer. I still have some blury-ness and ever since I started wearing th RGP, I am pretty sure it has made my condition worse. What makes the whole process worse is that in my day to day life, I need to be able to where the contact lenses for atleast 6 hours.

I've been looking into other treatment options, such as corneal grafting, cross-linkage..etc. Is there any way for the NHS to give me a corneal grafting, the staff literally told me I can't have it since mine is the early stages and I'm not old enough (18). I am now thinking of getting cross linkage done privately. Does anyone know how much this would cost.

As I'm going university soon to study Medicine, I need to be able to wear contacts for long periods of time with good vision.

Any advice is highly welcome! I am really struggling hear.
Thanks!

Hi Gowrav,
There's now a variety of different contact lenses for KC so if you can't get on with rgps, it may be that another type of lens would work for you. There are special soft lenses for KC such as Kerasoft, some people find piggy backing (wearing a soft lens underneath the rgp) works well for them, there are hybrid lenses such as Synergeyes, and there are scleral and semi scleral lenses. So you really need to go back to the optometrist who is fitting your lenses and talk about whether the fit of the rgps can be improved or whether you'd do better with a different type of lens. Some small eye units may not have all the different types of lens so if that's true of yours, then ask to be referred to a big city eye department which sees a lot of KC.
Only around 1 in 10 of people with KC ever get to the stage of needing a corneal graft - it's really a 'last resort' treatment. There are a few hospitals in the UK which are now offering crosslinking on the NHS. But crosslinking is no guarantee that you won't still need contact lenses to correct your vision - the aim of CXL is to stop the progression of KC rather than to correct the vision though some clinics do CXL in conjuntion with other treatments. Having CXL privately costs around £2000 depending on where you go.
If you'd like more info on KC (our basic information booklet and DVD of our last conference which went through all the options) do PM me with your postal address.
And if your vision is affecting your studies, do download the leaflet on 'Supporting Students with KC' that you'll find on the home page www.keratoconus-group.org/sitev3/publications.html
All the best
Anne

Hi Anne,

Thank you for your reply. After doing some research (from the time I made my thread), I am deciding on trying to get CXL done. Wouldn't it be better, even if I have to pay a lot of money, to prevent the deterioration from my eye than allow it to get worse and having to have grafting..etc done? Also do you know/where I can find the stats on how successful the treatment is?

Thanks

Well, as I said, the majority of people with KC never get to the stage of needing a graft because their vision is managed with contact lenses and the KC eventually stabilises. But of course quite a few people are now choosing to have CXL to stop the progression (if you search this forum on 'crosslinking' you'll find quite a lot of posts from people who have taken that option).
As for stats on CXL, you'll find some information on the NICE website (they issued guidelines for CXL last year) www.nice.org.uk/IPG320 if you look at the evidence they examined. And I'm sure you'll find other research studies if you just google collagen crosslinking.
Anne