UK Keratoconus Self-Help and Support Association

hi - i was diagnosed with KC 18 years ago, but received no real explanation of the condition - & as a kid was either just too stupid, intimidated or shy to ask. Was referred to QMC, Nottm. for lenses for both eyes - v.pleasant people, but not much further help or suggestion after I just couldn't keep the lenses in [ constant itching, weeping, discomfort & one or other of lenses flying out every time I sneezed ! - which was a lot.] After several months gave up. Don't remember any follow-up at clinic after this... ... No treatment or checks for next 15 yrs. - didn't know I needed them ! Assumed supposed to just get on with it. Then one eye test at opticians but didn't pick up on KC.Now 18 yrs. on - eyesight worse -where to go ? Regular optician's, or GP for referral ? What do people think? Karen.

I have had KC for about the same length of time and like you had problems with lens fitting, but I did have a good optician when I lived in Durham. Not told much then and the only people I knew with KC were the ones my specialist asked me to talk to once I had my first graft in 1989, the second was done in 1990. Had relativly good sight until now when part of the old cornea left in my right eye has changed so need lenses again, but they have advanced significantly in terms of front and rear curvature that the RGP lens was a lot more comfortable than I remember, hopefully will have them in the next coupl of weeks so that I can see again and go back to work. Been on extended garden leave for six weeks, but GP said my sight was nothing to worry about so I took a 30 year old race car to the Nurburgring to race (Europes longest and most dangerous curcuit) on only one eye!!!!!

This site is really good for info on KC, I have learnt more here in the past six weeks than the whole time I have KC. I have not found many people who have had KC for as long as us.

My e-mail is gdbeynon@hotmail.com if you would like more on how I have coped over the years and my experience of specialists and opticians.

Regards

Gareth

ive been going to the NHS for 16 years. I have a contact lens clinic visit every 6 months. its a great way to find out how things are progressing with my KC and theyre always happy to answer the odd question. origionally I had a referal from my GP

regards

Paul