UK Keratoconus Self-Help and Support Association

Hi
I was at hospital this morning having a checkup two weeks after my sutures were removed post graft in my right eye, everything fine and dandy. While I was there I was asked if I would be interested in having crosslinking done on my left eye, free but not on the NHS. I am going to the meeting in London tomorrow and was wondering if anybody is going to be there who has had it done and can spare me the time for a chat. I told them I would think about it and speak to them in a few weeks.
Pat

Hi Pat.

Sorry I can't help you with this but I look forward to seeing you tomorrow.

Out of curiosity, if I am understanding this correctly, why is this being offered to you free if it is not NHS? Are you a guinea pig or something?

Michael

Pat

This is clearly a subject in which many or even most of us has an interest. could you keep us posted on how things go, even if you do not decide to accept the procedure.

Andrew

hello,

please can you tell me the details of this? i want cross-linking done. i was advised to get it done yesterday in fact by a consultant i saw.

could anyone who knows send me the links to people in the uk who do this treatment? so far i've just found switzerland and germany and india info!


thanks,


tim

There are two places for definite in London and some NHS hospitals I think have got the goahead for trials.

Your consultant should be able to say where you can get it done in the UK.

Search C3R on this forum or corneal collegen crosslinking with rhiboflavin and you should find where peopel here have had it done in the UK.

hello,

i searched the net and found 4 private clinics and one clinical trial (all in london). i'm now emaiing them for consultations.

best wishes,


tim

Hi, I heard they had the go-ahead for c3r trials in Birmingham but hadn't actually started yet - but that was a few months ago so the situation may have progressed, does anyone know? I would be very keen to have it done too.
Ann