UK Keratoconus Self-Help and Support Association

Hello im Jay
im 17 from England. There is my intro. I have just been diagnosed with KC and im rather worried. Should i be? I dont want to end up blind. Specsavers refuse to see me from now on i have to go to the hospital. Is there anything i need to know? There is some treatment i could have in London where they use Vitamin B eye drops and UV lights and someone i was speaking to said they had it and it worked. The only problem i find withit is the £3k it costs. So if anyone can tell me anything about this KC at all i would be greatful it might stop me worrying so much.

jayboi2005

Welcome to the forum!

Where was you diagnosed?...it can be daunting to find out that you have got KC...but all is not lost and once its managed; you can get on with life per usual.

This site has tonnes of information and posts from numerous people whom have shared there thoughts, concerns and coping methods.

How far advanced is your KC?
Are you wearing glasses or lenses?
Where did you hear of this treatment?
Who said that it worked?

At 16 I wouldnt rush into anything harsh and above all you will need parental authorisation to have any procedure performed. There are a number of ways KC can be managed some suiting more than others.

I know its easier said than done, but bear in mind we all share something common here. So try not to panic too much....and feel free to air your concerns.

Have you been briefed on what the condition is when you was diagnosed?

Have a review and read of the following

http://www.keratoconus-group.org.uk/index.html

and

http://www.keratoconus-group.org.uk/whatiskc.html

Hope that helps

Jay

specsavers told me they were 99% sure i had it. but i have to go to the hospital. i wear rgp have been for 2 years, my sight is not that bad i can see the tv fine and read the text on it from about 1.5 meters away if i squint. but my vision is getting worse very quickly i have noticed.

Hi

What was the reason that you have been wearing RGPs for two years for?.......

Jay

Don't panic. You will not go blind having KC.

Take a while to have a read through the pages that Jay recommended, but please be calm.

Your eyes may continue to get worse, or the progression may suddently stop. Noone knows for sure.

Please let us know if you need any help or advice.

sorry you have k.c but like the others say there are loads of people with information here and as for going blind dont worry because you wont.

yes having keratoconus is hard to deal with but you have found an incredible way of speaking to people good luck keep us posted

keep your chin up and fight it

people have been giving me lots of help and support, but coming to terms with it only i can do. the fact that specsavers have known since Jan 04 and only told me yesterday worried me because they didnt tell me. i was wearing normal Gas Per Lenses because i had astigmatism which i still have i think.

Jay,

As has been said recently, the larger high street Opticians chains often just don't have the time available to help out with people with KC.

I know that being sent from your opticians to hospital is very scary - it happened to me with Boots. When I saw the consultant she smiled, confirmed that I had KC and advised me to get a better optician.

You'll find that many small practice opticians (say under 10 branches) would be only too pleased to be able to help you out with your KC, as they often have the time to sit with you and understand you. Best of all, these independants are much easier to see than a hospital doctor - appointments are days rather than months away.

Have a ring round, and be reassured, although the NHS system does require a consultant actually diagnose you with KC; opticians may only suggest that you might have it.

jayboi2005

Good to see you. Like everybody else I was deeply worrid when I was first diagnosed, but over the years (and especially since I found this board) I have found that each stage has been met by new opportunities.

the large friendly letters on the cover of the Hitchhikers Guide to the Galaxy give very good advice: DON'T PANIC!

If your hospital has a contact lens clinic this will offer you a service staffed by optometrists who know about and understand KC. If your hospital does not, you may be referred to someone in private practice who has similar knowledge ande experience.

Keep us in touch with how things go. meantime while we are all sorry to learn of your diagnosis, we all welcome you to our "band of siblings, we few ..." (paraphrased from the poem by William Garrison)

You are in our thoughts.

Yours aye

Andrew

Hi Jay! (and anyone else who has recently joined the forum) If you send me a PM with your postal address I can send you our information booklet about keratoconus which you may find helpful (or you can e-mail me at anneklepacz@aol.com)
Anne