UK Keratoconus Self-Help and Support Association

Hey Guys,
I just had another conversation with my brother who has reversed KC (His corneas sag inwards). He lives near Birmingham but was diagnosed with KC back in the eighties when was 17. I was away at sea so I missed a lot of this and I am just playing catch up since I was diagnosed and we are busy comparing notes. The system more or less gave up on him because he cannot wear lenses. He is now re-considering a graft which for some reason lost in the mists of time was not offered.
Anyway, I was discussing the C3-R procedure with him (just the little I know) and he told me that his recollection was foggy but he remembers having something very similar through my parent's private health arrangements in Huntingdon. He is not 100% sure but says riboflavin was a part of the procedure and they scraped / removed a layer from his cornea.
Can anyone add any detail as to what this procedure may have been or if indeed it was C3-R (which I thought was very recent?)?

Matthew, I very much doubt it was crosslinking that was done, as it's only been approved by the ethics committee early this year in the UK.

Which hospital did he go to? ...you could contact them to see what it was they did to him. It may have just been dilating drops he is remembering??

All the best

Matthew

That does indeed sound like the procedure...but 1989 would be far out....I think the earliest recorded case of C3R in one form or another is/was 1998/1999; and that was experimental.....but again 1989 is some time away fm that.....and if he did have something along those lines it would have been entirely experimental and he would have been told of this......

J

I was diagnosed around 1980 and had my first graft in 1992. As far as I was aware the only things offered back then were rpg's and grafts, but information was sparse and hard to come by so I might have missed it in my search for info on KC back then.

I was really surprised when I started looking up KC on the internet earlier this year to see how much things had changed and how many options were now available to people. In the 80's I remember feeling very fortunate that I hadn't been born twenty or thirty years earlier and no doubt people being diagnosed now will be equally pleased that they weren't either.

I am really not good at using Google, but I decided to see if there was anything I could find about how long C3R had been in development. I failed, probably because I didn't know what search terms to enter.

However, I did find something else. An article at http://www.keratoconus.asn.au/CC_study.htm published by Keratoconus Australia. I found it interesting, even if it does not answer Matthew's first question.

Andrew