UK Keratoconus Self-Help and Support Association

Hi, my name is Nathan, I am 33 years old and have recently found out I am suffering from Keratoconus, although I suspect I've probably had it for a while cos of my constant squinting even when wearing my glasses. I have a couple of questions that I'd appreciate if any anyone could answer for me ?

Firstly, I've been told I wil need to wear contact lenses to correct my vision, I tried contact lenses a couple of years ago and could not manage to keep them in for more than a couple of hours by which time my eyes would be streaming which caused my vision to be worse than without them !. Are there any alternatives, ie special glasses, surgery etc ?, or are there any lenses partculartly good for someone with sensitive eyes ?.

Secondly, is it going to get worse ?, if so is there anything I can do to slow the process down ?, can it lead to blindness ?

Thanks, Nathan.

Hi Nathan, and welcome to the group.

Firstly, you don't need to panic. Categorically, you will not go blind with KC. Treatment tends to progresss along the lines of glasses, RGP contact lenses, (sometimes: a different sort of RGP lens, maybe "Rose K" or "softperm") scleral lenses and in the most severe cases only, corneal graft.

If you didn't get on with lenses before, don't panic either. There are many weird and wonderful types of lenses, and many of us find something that provides a useful balance between comfort and vision.

Most of us with KC seem to have "sensitive eyes" to some extent - either to bright light, or lenses (or even both). Scleral lenses are often a good option for us; but they're too specialised for opticians - you probably need to see a hospital expert.

As to will it get worse? Nobody knows; not even your local medical experts. At 33, the usual opinion is that it won't; but I'm 38 and mine is worse now than a couple of years ago.

There's two things to remember about KC though:

We're all different, with different experiences
We're all here to support each other. There's a great group of people on here, and I'm sure you'll get some other opinions!