UK Keratoconus Self-Help and Support Association

Hi Everyone,

After returning from my hospital appointment I feel I am more informed about my keratoconus. You may wonder if that is because I'm newly diagnosed but that isn't the case.

I was diagnosed with KC at 19 years old nearly thirty years ago. In those days it was a really frightening experience and there didn't seem to be many people who you could talk to. I can honestly say I never spoke to another person with KC for the first eighteen years or more. Then quite a few years ago I discovered this wonderful website and suddenly I didn't feel soo alone. Anyhow I have always been amazed at how informed people on here are. I have never been told the thickness of my cornea or even how bad my KC is. So this afternoon I asked. Apparently my KC is moderate//severe and my right eye is 265 thickness and my left eye is 305. Apparently much too thin for cxl but as I am now approaching 50 then my cornea should be naturally stiffening with the effects of "old age". So you see there are some benefits from getting old.

Kind regards
Libby

Hi Libby,

That's great to hear.You must be happy happy.

Old is old as they say.

And yes it seems like most consultants are more educated about our condition.

Hope things stay good for you

all the best
saima

Hi Libby,

Well done you!

You could have additionally asked whether this is stable or not (how does the thickness compare to last time and the time before.)

All of you attending hospital should ask these questions so that you understand whether your condition is progressing or not.

Incidentally, although one should naturally cross link as you get older, I am not sure this is true and I am also not sure this has actually been studied - its what is generally "thought". I have just referred off someone of 48, whose corneal shape is definitely not stable, to be considered for CXL. He is not necessarily progressing, but steepening and flattening at a regular rate, suggesting a less than "stiff" corneal structure.

Also, just for everyone's information, CXL is possible down to 250 if hypo tonic Riboflavin is used to swelling. The limit is 400 microns for the normal procedure.

Lynn

Hi Lynn

Thanks for that extra information I think the problem is with some of us is that we really don't know which questions to ask.

The thing is I haven't had a topography for about ten years. I think the last one I had was at Moorfields Eye Hospital - I then asked if I could be followed up nearer to home and because i was already in a lens they never did me a topography.

My daughter has KC now in her right eye so at least I am more informed as to what I should be asking for.

Thanks again.

Kind Regards

Libby