UK Keratoconus Self-Help and Support Association

Hello everyone!

I'm a lad of 25 who was diagnosed with mild KC at 18. I'm gone without aids as I couldn't get on with hard contacts which was the only treatment offered to me at the time. What I'd like to know is how has treatment changed in the past 7 years? I've been coping ok, but recently the vision in my right eye (the most affected) has gotten much worse which is leading to some tiresome eyestrain! (and afternoon naps.) I'm sure all the computer use for University hasn't helped, so it's definatly time for a check up!

Thanks very much for you help!

Josh

Josh

Welcome to the forum!

The first thing to notice is that there is an ever increasing range of lens styles and lens materials. Many people cannot manage with RGP corneal lenses, but get along very well with hybrid lenses, soft lenses, scleral lenses, piggy back lenses etc. When I stopped being able to wear rpg corneal lenses I started to wear a scleral.

As to the availability of other treatment options, your ophthalmologist will be able to assess your suitability for options like INTACS, CXL or even a graft. Ask how your condition is and where you should go next.

All the best

Andrew

Hi Josh and welcome!
A lot has changed in the past few years. Rigid contact lenses are still usually the first option offered, but there are now special soft lenses developed for KC, such as the Kerasoft 3, which may be suitable for some people. Some people also successfully 'piggy back' (wearing a soft lens under a hard one) while others find scleral lenses give good comfort.
And for people who really can't tolerate contact lenses at all, Intacs (corneal rings implanted into the eye) can sometimes mean vision can afterwards be corrected with glasses, or can make contact lenses much easier to fit and tolerate. Plus there is collagen crosslinking, designed to stop the progression of KC, which is available privately in a few centres and is being trialled on the NHS in some hospitals.
So if your vision has deteriorated, it's definitely worth getting referred to your hospital eye clinic and exploring what your options now are.
Good luck
Anne

Try and give the scleral or mini scleral lenses a try. They are extremely comfortable, although tricky to put in. I think the scleral lenses are by far the best. My optometrist told me since fitting the mini scleral lenses his patients, who were due for a corneal graft, were satisfied with just the lens. I guess it is just a process of finding the most suitable lens which, unfortunately, can take some time. But, that is the bumpy ride of the KC rollercoaster. Good visions to you!

thanks very much for your help! I've since had an appointment at the eye clinic at the Hospital and should be fitted with new lenses in June. I'm glad I've taken some action and there's new treatment available now, I'm actually looking forward to it