UK Keratoconus Self-Help and Support Association

hi everybody,
I have had keratoconus for 7 years now and opticians havent been able to fit a contact lenses I could wear.
I have been 5 years here in the uk and paid private optician for 2 years, he tried all types of lenses he could and no success at all. After that I got an appointment with 2 different opticians at the Bournemouth eye clinic and both of them said They could do nothing. The only suggestion was to wear pin hole glasses to help me focus when using the computer.
My vision is deteriorating more and more, and the chances of having something that could help me to improve my vision seem imposible.
Can any one give me any advice? Dont know where to go from here.
thanks

Hi Mali and welcome to the forum. You don't say what type of lenses you've tried. As others here have said, there are a number of lens options for KC these days - the ordinary corneal rgps, Rose K lenses, Scleral lenses, piggy backing with a soft and hard lens etc. Has your clinic tried all of these? If they don't have all the options themselves, then they really should refer you to somewhere that could do more for you. I don't know if any forum members in your area have any suggestions?
Anne

Also there is the new SynergEyes KC lens. I'm getting fitted for one and get it in about 4 weeks. They feel awesome !!!!

Thanks for answering...
Well, as far as I remember they tried most of them.
The Rose_K, RGP, Soft Lenses, and some more. In one year my optician tried about 20 diferent contact lenses. Crazy!
The main problem is that when wearing the contact lenses my vision worsen, I see less, get double vision and shadowing.

Hi Mali,

I'm new to the forum also (joined the other day).
I have been wearing RGP for the last 5 years with no probs. It took ages to get used to them and to get the vision right

All I can say is to stick with it if that is what you want. I had to as glasses (of any type) where no longer a solution for me.

First they did the fitting part (that bit took about 6 months with visits every 2 weeks) and when that was spot on, they worked on the correction.

I have to admit my vision went from 6/36 (corrected with glasses) to 6/12 (corrected with contacts) on the first visit (it got worse then better and fluctuated a lot until the fit was right), but the person I saw also has many other KC patients so I recon experience helps a lot.

Ask you next optomotrist if he/she has delt with KC before and what success they have had. If they haven't ask them for the name of anyone they know (optomotrist wise) that has and go to them.

Damo

Mali

Welcome to the forum. I am sorry you are having such a wretched time sorting out lenses that will suit your KC.

If the time comes, or has come, when lenses fail, there are of course surgical options. Has anyone spoken to you about these yet?

Andrew

Mali

Have you tried Scleral Lenses?..

J