UK Keratoconus Self-Help and Support Association

I completely understand how you feel, Oli. I think a lot of people with KC have had similar experiences. For me, my main gripe would be with opticians rather than hospital consultants. I went to a high-street optician for 2 years, constantly changing glasses for an increased prescription, and was to...

Great information on those new tests James, like it. Puns seem to crop up all the time when talking about KC. I've often finished explaning the whole thing to the uninitiated with a "there's alot worse in the world, you've got to keep a perspective on it - no pun intended" I guess it's go...

Apparently they're testing doing that whilst performing CXL to get it to stabilize in the 'better' position. It's not here yet, but hopefully one day that could help even further. They've actually just started doing this in some places abroad (not sure about the UK though). It's called 'refractive ...

I've read quite a few research papers where consultants are now recommending to their patients to have cross-linking done so long as keratoconus has been diagnosed and the patient is under 35yo, even if the KC isn't progressing at present. The thinking behind this is that cross-linking is considered...

I've had cross-linking done. As Anne rightly says, the operation itself isn't painful. The 'scraping of the cornea' sounds worse than it actually is. Assuming your son is having 'epi-off' cross-linking then the first 48 hours afterwards will be painful, but it will soon go. The pain is worth it if i...

Best of luck to your son!

It's definitely the right decision. The first 48 hours are the toughest but once that's out of the way he'll be fine.

Well done for getting through it! At least the worst is over now. For me the blurriness wasn't too bad after two weeks or so, but it probably took 3 months before my vision was back to how it was pre-cross linking. But for some people it can be sooner, so you may be lucky. Another thing I had for bo...

Some interesting news which I thought was worth sharing. Richard Lindstrom and Roy Rubinfeld have commented in recent weeks about the success they've been having with combined Conductive Keratoplasty and 'epi-on' cross-linking. Not only has it stabilised the condition, but the cornea ends up flatter...

I'd be interested if anyone has any experience of suffering with 'imbalances' between eye muscles and related conditions like convergence insufficiency? I've found some examples by searching the forum, so this does seem to be something which is KC related. A major problem I've had over the past 18 m...

I've had cross-linking done in both eyes. Yes, the first 48 hours are painful. However, I wouldn't say it was unbearable. The best thing to do is to go to bed and try to sleep. When you think about it, 48 hours isn't too long, and from my experience I'd say that the first 24 hours are the worst and ...