UK Keratoconus Self-Help and Support Association

Hi,

I was diagnosed with KC just over a year ago at age 31 and I have been seriously struggling with hard contact lenses ever since. I am only able to get good vision in them for a maximum of about 15 - 20 minutes. After this time they completely cloud over and i cannot see through them. My Optomotrist suspects that my eyes are reacting to the lenses which is causing them to produce too much protien. I have been asked to contue to try to wear the lenses for as much time as possible each day in order to potentially train my eyes to accept them. Has anyone ever heard of this before or had a similar issues? If so, any advice?

As a result of this I have to wear my glasses most of the time, in particular for working and driving. I am still legal to drive in my glasses but I'm not far away from no longer being legal. This is a huge concern for me as I commute 500 miles a week to work and back and I also have to drive to visit clients as part of my work. I also really struggle to do my work due to my poor vision and often finish the day with the most awful headaches due to squniting at a computer screen for hour on end. I am getting really distressed by my situation and I am desperate for some help.

My consultant at the Oxford Eye Hospital suggested Corneal Collagen Cross Linking to me at my last appointment. He told me that it is not available on the NHS and that I should look into it myself if it is something that I am interested in. I'm not really sure where to start with this. I'd very much like to visit a Consultant who can perform this treatment to talk it through but I don't know where to find one. Can anyone reccomend someone? I live in Oxfordshire however I would be willing to travel if necesary.

I really hope someone can help.

Thanks

Kara

Kara

Welcome to the forum. I'm afraid that I can't answer your question but I am sure that there will be somebody along in a moment who can.

Please be aware that the forum cannot endorse or recommend any individual consultant, nor will we publish negative comment about the work of any individual. That said, I am sure that there will be people in your general area who will share their experiences with you.

Yours aye

Andrew

I used http://www.sathish-srinivasan.com/ He's a bit far from you (Scotland) but very good. But if you just want some info go to his site as there is a good leaflet about CXL and the procedure http://www.sathish-srinivasan.com/images/collagen.pdf

Good luck.

Hi

I've had KC for about 11 years, but it's only been over the past 2 years that I've noticed my vision change. I trialled something like 32 pairs of lenses and have tried glasses, but got to the point where I was fed up trialling lenses that just didn't fit and glasses made no difference whatsoever (the poor fitting lenses were also scratching my corneas). That got alarm bells ringing (my optician was hopeless – was more than happy to sell me £325 glasses that made no difference to my vision). I therefore decided to spend the £325 on a consultation at the Centre for Sight in London (I had a sister whose had grafts in both eyes by the surgeon (when he saw NHS patients) and so knew of that particular surgeon whose since setup the Centre for Sight both in East Grinstead and London). Thought they were fantastic and had my right eye crosslinked last month and am due to have the other done in a couple of weeks. The purpose of crosslinking is not to improve vision, but rather to halt progression of the condition (though some do find a slight improvement). Crosslinking basically strengthens the cornea. The procedure itself was no picnic, but it wasn't that unpleasant either. It takes about 3 months for the cornea to stabilise and thereafter my surgeon intends to look at options which will improve my vision (intacs and a wedge resection). I know there are other places that do the same e.g. Accuvision. There's been a few forum members who've recently had C3R and so will hopefully post more info.

Best wishes.

Caroline.

I also had CXL at Centre for Sight a couple of years ago. Good, professional clinic in my opinion - I was more than happy with my treatment and follow up.

It may, however, be worth seeing if any other NHS clinics in your area that undertake CXL. Some do, as it is on trial basis. St Pauls at Liverpool did do, not sure if the trial is still on going. It is difficult to find this information out sometimes but if your finances are stretched (cost me in the region of £1000 for one eye at Centre for Sight) then it may be worth asking the question.

How much has your KC been changing recently? The reason i ask this is as you get older apparently the cornea stiffens naturally which is the same as CXL. CXL wont improve your eyesight it only stiffens the cornea. Intacs can change the shape of your eye, which can assist in better fintting lenses.

I have struggled for a number of years with CL due to comfort - I had CXL (privately) followed by Intacs (NHS) and the cone has changed from -10 diopters to -7 (according to the optician). I am now waiting for a pair of contact lenses to come back in for a refit, have already been wearing them for a while but the fit wasnt quite right. However the comfort was fantastic (and the vision was pretty good too) and i was upto 7 hours wear time a day within 10 days - which by my standards is pretty good, like you i couldnt wear them for more than an hour or so previously.