My KC Journey...

[jb0oo]

Hi guys,

I'm Jonny, 21, and I was diagnosed with KC when I was 16.

My left eye is considerably worse than my right.

I was transferred to Mr Dandoux at the Sunderland Eye Infirmary, who recommended CXL. The procedure wasn't funding by the NHS but I coudln't really turn it down so I had the procedure on my left eye in 2007 and my right eye a year later, in 2008.

After the CXL procedures I went back every 6 months to keep an eye on things, excuse the pun.

Everything has been fine, all stable etc with no problems until June this year.

A few weeks ago I went for my 6 month checkup and he said that the stigmitism has progressed in my right eye, though he suspects that it could be due to wearing my rigid contact lenses? Hes gave me an appointment for in a years time to see again.

A year seemed like a lot of time to wait if the stigmistism has returned, but I trust him completely.

If the stigmitism has returned, whats my next stem? Cornea Transplant?

Thanks,
Jonny.

[Anne Klepacz]

Hi Jonny and welcome!
It must be disappointing that the crosslinking doesn't seem to have stopped your KC progressing in one of your eyes. But it sounds as though you hadn't really noticed any great change in your vision in contact lenses in the last few months so hopefully the progression is slow. A corneal transplant isn't usually done until contact lenses can't correct the vision so it's quite possible that you'll never need to go down that route.
All the best
Anne

[Andrew MacLean]

Jonny

Welcome to the forum. Take things easy; there are many steps between you and any possible need in the future for a cornea transplant.

The most obvious step is the continue with contact lenses. This does not need to mean 'more of the same', there are several different lens types and lens materials and if one lens becomes a problem, there are plenty more to try.

As Anne says, most people with keratoconus never need anything other than contact lenses to manage their condition.

Andrew

[jb0oo]

Thanks for the reassurance guys.

I kind of assumed that every KC sufferer had to, at sometime, have a transplant. I didn't realise that the condition could be controlled solely by contact lenses for a long time, which is a relief!

I'm currently studying Computer Science at Uni so I spend a lot of time on a Computer, would this affect the condition at all?

[Andrew MacLean]

Take time away from your vdu, in fact follow the industry guidelines. I have my screen set up for somebody with KC, and can adapt it further at the click of my mouse (I use an Apple Computer running the MacIntosh Operating Systen 10.5.8

All the best

Andrew