I've Just Been Diagnosed - What can I expect?

[andread]

I've just been diagnosed with KC in my right eye. My prescription isn't too high at the moment, but has jumped quite significantly from last prescription. I'm in my late 20s and as far as I'm aware KC does not run in the family although astigmatism does, so maybe it does without them being aware of it. I've been referred to the hospital now and just wondering what I can expect! I've been quite shaken by it all as I just went in for a routine check up because I'd been getting headaches and starting to squint a bit with my old glasses.

[rosemary johnson]

Hallo Andread
elcome to the forum, and the wonderful (?) world of KC.
What to expect? well, that could cover quite a range of possibilities.
I'm afraid one thing that's likely to come about is spending rather more time than anyone would like in an ideal world sitting around in hospital waiting rooms.
One can get through a lot of crosswords, sudokus, kaikuros and the like - or in my case, mess them up!
If you haven't already had this done, they are likely to want you to spend a lot of time sitting with you chin on the chin rest of complicated looking machines of various sorts while they shine bright lights in your eyes and peer at them down little microscopes. One of these shines a pattern of pink or orange concentric rings at your eyes and produces what is a diagram of the steepness of your corneas - the results look a bit like a map of the growth of the hole in the ozone layer.
After lots of that, hopefully you'll get passed on to someone who can actually fit you with something to see properly.
If you're lucky, you may be able to cope with glasses still. The next step would be contact lenses, of which there are an ever-extending range of different types, sizes and materials.
A small percentage of people with KC end up having a corneal transplant - that's much the minority, though.
There's a fairly new treatment called collagen cross-linking - CXL - otherwise known as C3R. The idea of this is to encourage the cornea to develop some stiffer moral fibre (!) and slow down or even halt the advance of the KC. There are articles and threads on the website about this.
SO far, CXL is only available in seelcted centres as "trials" - you may be lucky and suggested for one of these. When it will get beyond the trial stage, we don't know yer.
There are also things called INTACS - again, you can find more about these on this site - which, rather than sitting on the eye like contact lenses are surgically implanted into the eye and aim to stretch the cornea to a more regular shape.
Thhis sounds like a bewildering array of possilities! - but before you panic, there are many people with KC who do fine with ordinary contact lenses or even specs.
Rosemary

[ThomasH]

Hi andread,

I think it'll depend on how much your KC progresses. I've been quite lucky so far - it has progressed fairly slowly and I have just been wearing glasses for the past 3/4 years and my eyesight has been pretty good. Did the eye doctor think you may have had the condition for a while prior to the diagnosis? I'm thinking if you have, and you haven't noticed any major differences in your sight, then it might be quite slow at progressing. Again, unlike rosemary_johnson, I've spent no time in a eye doctor's waiting room regarding my KC (apart from when i was first diagnosed and referred by my high street optician). My point is, I think it depends on how 'bad' your KC is.

All the best,

Thomas