UK Keratoconus Self-Help and Support Association

Thank you both for your help.

Anne I have also emailed you.

My son has KC. He has been treated in a NHS hospital, which although caring, admits itself that it does not specialise in Keratoconus. I was wondering if it was ok to ask on here which hospitals specialise in KC. I could then ask for a referral to them. We are in the South East of England.

Thank you all for your support and advice it has been extremely useful. An update is that we went ahead and he has had one eye done. We came to the conclusion that the vision was pretty bad so what have we got to lose - sons logic not mine! The procedure went well, he had a couple of uncomfortable d...

My son had cxl done last week he is 15. I had a panic post on here questioning if it was the right thing to do! He was uncomfortable and in pain for a few days. He was given ibruprofen and cocodemol which he took for two days. He had the bandage lens in for a week as it had not all healed before the...

LizB the fitter is High Street but she does work for the hospital but this is the one that does not seem to have a lot of knowledge with KC - so I am looking to see if they can refer us to a larger or more specialised department - thank you although obvious I had not thought of that :oops: Harker ye...

Again thank you for taking the time to answer. Andrew your words of support are reassuring and I already appreciate the information I have got from this site. LizB I think you are right that our NHS clinic has little experience of KC. I will ask if we can be referred to a larger specialist centre. W...

Thank you all for your replies. His KC is progressing and he has had 13 different eye prescriptions in 2 years so we do not have a lot of thinking time unfortunately. NHS have said "we can always do a transplant" I am grateful they can offer this if needed but would not want to put my son ...

My 15 year old son has KC. He is managing with glasses (only because he had an uncomfortable experience with contacts at the opticians!). His eye consultant is really anti CXL. The consultant however had very little information on CXL and almost seem not to have heard of it but said "best to le...