UK Keratoconus Self-Help and Support Association

Hi All,

I hope everyone is keeping well!

I had my annual check-up recently, and my KC is stable in both eyes for the seventh year in a row.

I’m 26 (CXL in right eye 2019, none in left eye but no progression noted in either).

My vision hasn’t really changed in this time either.

I know none of you have a crystal ball but has anyone found that their KC has stayed stable for a number of years, never to progress again?

I’m not sure how this condition ‘typically’ progressed. I’m of course hopeful that it won’t progress any more!

Hi Cameron,

That all sounds like great news. But to answer your question, before the widespread use of CXL, then 'typically', up to 1 in 5 people with KC would progress to a corneal transplant in one eye (and a much smaller number to transplants in both). CXL has really transformed things. Moorfields monitors people post CXL for 5 years, so presumably any further progression would happen within that time frame. I don't know the exact stats, but the number of cases where CXL is repeated is very low. Of course, the procedure has only been around for about 20 years, so no one knows the long term effects and whether any changes are likely beyond that time scale. But hopefully treated eyes will stay stable for decades. As for the other eye, although it's rare for it to be completely free of KC, any KC often stays mild and doesn't progress very much. So all the evidence so far is that the prospects are good and there won't be a need for charities like ours in 20 years time!