Ever heard about an eye disease called Keratoconus?

i hate it but i have to live with it. care to share your stories with me?

How did you feel when you first found out you had KC?

I recently found out i have it. At present my eyesight is OK but it's noticably much worse than it was two years ago.
How did I feel when i found out? Well, put it this way, I was diagnosed almost a year ago and i've done nothing about it since I read up on it when i got home that day but when i saw words like 'support group' and 'corneal transplant' i just decided i don't want to think about it. Basically i'm kind of in denial. i don't know much about it and i'm not sure i want to. i guess the time will come when I'll have to deal with it but until then I just can't bring myself to consider the possibility of loosing my sight. If i'm really honest with myslef, yes, i'm scared. I really have no idea what to expect over the next few years. Will I be able to drive? play sports? draw? what about reading? I think i could cope with losing all the others but reading? I don't think i could manage if i lost that? what can I expect? I say all this not really wanting to know the answers. I want to hide and pretend this is not true for as long as i can.

nope sorry

I have heard of it because my boyfriend has it.
When I first met him he had already totally lost the vision in one eye. He had a cornea transplant about 2 years ago now because it had gotten so bad his eye was going to have a "cornea meltdown" we were told.
As a result he has sight in the eye that was blind but now things are worse for him because he has terrible double-vision and on top of that the eye drops he needed to use gave him a cataract and so he still has a lot of surgery to go to fix the bad eye. Eventually the other eye will need a transplant too :(
I'm sorry to here you have the disease and if you ever need to talk to anyone about it I can give you the address of a website for people with the disease. You can talk to heaps of other people in the same situation.

I was told I had KC, but then told by another specialist that I just had a misshapen cornea. Phew!

Check out this website for more info and support: http://www.nkcf.org/

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