UK Keratoconus Self-Help and Support Association

yeah you're right re central heating, it bothers my eyes and its not even me who has KC, it's my daughter! It bothers her more than me tho

:( Hi there, Am wondering how hydrops progresses given that it's very different for each individual. Charlotte is now on day 17 and I think that in the past couple of days the cloud in her left eye looks more to me than it did this time last week. Its not gunky but it tears up from time to time espe...

Thank you so much for that Gareth. It is good to hear of your experience with the soft contacts. We feel that we need as much info as possible so that we hopefully have a better chance of making the best decision for Charlotte. So cheers for that!

Thank you Lia and Thank you Chris, We very much appreciate your replys, Lia, Charlotte hasn't worn specs for over 3 years now since diag in nov 2009. she'd been wearing off the end of her nose for ages before diag which is what prompted us as parents to get a referral back to the clinic because we k...

Well here's the latest on Charlotte and her hydrops. Its day 15. Yesterday she had an appt at Hull Eye Clinic with the corneal specialist. Unfortunately he was on call so we saw one of the doctors instead. We've never actually ever talked with the consultant yet. Bit miffed about that but I understa...

Hi, our gp hadn't heard of it either, more and more these days I speak to health professionals who haven't heard of it either. I am dealing with KC secondhand as my 20 yr old daughter has it (she has Down's syndrome). Frustrating for us having to explain everything to those who we kind of expect wou...

Hi, Well Charlotte is day 10 of left eye hydrops, coping admirably well and not complaining of any pain. As a young lady with Down's syndrome she is so amazing and brave! Next Monday she has her appointment with Mr Stewart (Corneal Specialist) at the Hull Eye Clinic. My husband and myself are gather...

Hello there,
I am the parent of a young woman with KC. it is with great interest that I read your post this evening. I shall be waiting to see what the other contributors bring as I am very interested by your being advised not to wear contacts in your KC eye. Thank you for posting and I wish you well.

the optician suggested I try Omega 3 supplements, oily fish and nuts. I can't do nuts, leaving the other 2 options. As with suggestions like ‘drinking red wine is good for your health’, what ‘they’ never tell you is in what dose to take it, if some are better than others, frequency of the dosage et...

thanks again for your replies. we really do appreciate them.