UK Keratoconus Self-Help and Support Association

hello everyone,

if anyone is interested i'm going down to london to meet the doctor doing this clinical research at moorfields:

Corneal Collagen Cross-linking with Riboflavin (C3R) with UV light and pre-operative ortho-keratology (Ortho-K): a pilot study

A study of the clinical results of a new method of stabilising the cornea, and improving the unaided vision, of patients with keratoconus.

basically they're gonna try and mould some people's eyes with a lens before cross-linking it to see if it changes the shape permanently.

i'm also going to the london centre for refractive surgery on friday for a cross-linking consultation at the end of this week.

after these appointment i need to decide what to do, probably i'll choose to join the clinical research though as it's free!


best wishes,


tim

tim

This really sounds exciting. Keep us posted!

Andrew

hello everyone,

well the bloke i saw from moorfields was really nice but to cut a long story short i have too much scarring to join their trial. they have my details on file and they'll let me know when they start a new trial in the new year that will apparently include people with scarring, very thin corneas and so on.

so i can now either wait for this new clinical trial to begin or look elsewhere.

i've also been to the london centre for refractive surgery on harley sr and the guy i saw there was very nice as well and i think might go there for the surgery as i don't really want to wait ages.

the other option is the trial at guys and st thomas', i'm waiting for them to phone me back.

i might also try scleral lenses soon so they wont rub against my cornea and create new scars and make old ones painful.

so that's it really. it's totally been worth seeing so many different people for opinions. i'm going to see or speak to at least two more before i make any final final decisions!


best wishes,



tim

Tim

What about a trial with soft lenses?

I think they are interested in people with steep cones. I find them far more comfortable than RGP's and no rub either.