UK Keratoconus Self-Help and Support Association

Hello to everyone, I found you're group whilst searching for information on Keratoconus. I was diagnosed as having KC about 18 years ago, both of my eyes have been affected although my right eye is far worse than my left. At the time of diagnoses I was given a hard lens to wear in my right eye which I found impossible to get used to, since then I've worn spectacles, and have probably gotten by with the poor vision in my right eye by over-compensating with my other eye. I have reached a stage where it doesn't seem possible to correct my vision using spectacles I've also started to develop a squint in my right eye when I am tired, although I tried lenses many years ago and opted to wear glasses, I would now like to reconsider either soft or hard lenses if they would help to correct my vision. Can anyone point me in the direction of an optician/specialist in the London area who is familiar with treating KC that might be able to help?

Mark

Welcome to the forum. I can't answer your question about London practitioners, but I am sure that there will be somebody along in a minute who can.

Andrew

Hi Mark
You'll find a number of optometrists in Greater London who see people with KC on our home page www.keratoconus-group.org.uk/optoms/index.php
These are mainly private practices, where you'll be seen quickly but will pay the commercial rate for contact lenses. Alternatively, you can go down the hospital eye clinic route, by asking your GP to refer you to somewhere like Moorfields or St Thomas's. Waiting times for appointments and between appointments are longer but you'd pay the NHS rate for lenses (currently around £55 per lens).
There are many more different types of lenses and materials, both hard and soft and combinations of the two, than there were when you last tried a lens, so hopefully you'll find something that works for you.
Anne

Andrew/Anne,

Thanks for your replies and info. I should probably have had a better look around before posting my question. After delving deeper I can see that there are a lot more options than I realised existed and a lot more sufferers of the same condition, this has already made me feel a lot more positive about dealing with KC than I have in years. I think I would be wise to try the GP referral/NHS route first and see how it goes - I made an appointment to see my GP this morning. My previous experience was a long time ago and in a different part of the UK, originally an optician referred me to my GP, who didn't know what KC was but 'referred me to my local NHS hospital anyway'. At the time I wasn't really given any information and I didn't have anything like the web and didn't know of anyone with the same condition, so I've always just tried to ignore it; typically male thing to do I guess.

Mark

Hi Anne

I've been chatting to Lynn as Gartnavel have given up on fitting me with a hard lens following my INTACS, as I'm very allergic, but I feel I haven't explored all my options & Lynn agrees with this too.

Thanks so much for the list of Optoms that are KC friendly - I've just booked to see a guy less than a mile from my home & he can fit the Kerasoft or Synergeyes lens that Lynn has suggested

I'd just like to say thanks to you & Lynn & all the other contributors to the forum for all the advice & info - its priceless!

Cheers

Claire

Hi Claire
It's thanks to Lynn that we have the KC friendly optom list, so it's her you need to thank!
I do hope you find a lens that works for you. And thanks for the positive feedback about the forum. I'm certainly constantly learning new things about the options for KC from the posts here, so keep them coming everybody. And my thanks to all the people who post supportive messages to those going through a bad time. Trying to help one another is what this forum is all about.
Anne

So, I went to see my GP today and after giving her my history she is referring me to Moorfields. I'll wait and see how it goes....

Hi Mark
I was diagnosed about 8 years ago and have been under Moorfields ever since. I tried RGP lenses several times never being able to get used to them. However in all that time no other options were available. I had this epiphony earlier this year that I would go for hypnotherapy and maybe that could help me get used to my lenses. In my consultation the therapist recommended that I do research first to find out if other people are having the same problem. So that's how I came across this forum. After finding out about the kerasoft lenses here I couldn't find any optitians linked to Moorfields that fit them. I guess things change all the time but I just thought I would give you a heads up to specifically ask for all the options they offer because they may not just give you this information.

I have recently managed to get a referral to the Royal Free a kerasoft optitian works there. Finallly have an appointment which is in a couple of months. If kerasoft lenses work for me it will be like a new lease of life! Trying not to get hopes up too much though as I know it doesn't work for everyone. Wish me luck! Good luck to you too!

minterlee
Welcome to the forum!

Andrew

Thank you!