UK Keratoconus Self-Help and Support Association

for me the biggest problem with my KC is dealing with its symptoms.for you which KC symptom that affects you the most?and how can you deal with it?

..." Have they not travelled in the land so that they should have hearts with which to understand, or ears with which to hear? For surely it is not the eyes that are blind, but blind are the hearts which are in the breasts."

There is wisdom in these words!

For me the worst of the problems with which I lived while I was wearing contact lenses was the severe pain when a bit of dust got into my eye beside the lens.

How are you getting on?

Andrew

there are so many. i think one of the worst for me has been restricted vision and tired eyes at night- I really miss the days where i could read in bed before going to sleep. i still try but normally only manage about 1 page before giving up.

I would say mine is the glare which results from having KC. I fine myself watching the lines produced around everything rather than focussing on what I'm supposed to be looking at. It's really distracting!

I think it's being so tired when not being able to see well. When I'm not wearing lenses I tire myself out struggling to see. It's so difficult to participate in anything and the amount of effort it takes to concentrate and focus is enormous. At the minute though even with lenses MS fatigue is making me fall asleep easily but I am getting there with more early nights and rest.

Hoping everyone can overcome their problems with bad eyesight.

Worst symptom? - hypersensitivity to bright lights. What the pro-jargon refers to as "photophobia".
Ironical piece of jargon, really, as my worst bugbear of all is camera flashbulbs. Or flashguns, whatever they are these days.
They are just SO painful! - and the increase in painfulness has come as my eyesight has been deteriorating, so I have to wonder if the brightness and pain of the flashes are actually burning off bits of eyesight.
Intense burning sensation well behind the lenses, INSIDE my head, as if retina on fire.
How do I cope? - I don't. I can't go anywhere there may be people taking photographs and using flashes.
Have spent hours on phone to people organising events I want to go to, need to go to fo various reasons, about this.
Reaction either "Oh well, we must have photos" or else to assure me all will be well - and I get there and still get flashes right in my face, aaarrghhhhhhh!!!!
V depressing.
And would you believe - A Certain Eye Hospital is not prepared to have flash-free Annual Meetings for all those patients (and others) it entices to join up. Eye Hospital has meetings inaccessible to (certain) of its members because of their eye conditions.
Irony? Or - ???
OK, well, here's another one: have been being told for years that light sensitivity was something that went with KC, wear dark glasses and big hats, it's due to the light scattering in odd directions from oddly-shaped cornea. SHould be better when contacts lenses in (it isn't, it's worse, as if the lenses only focus the pain).
About the only scrap of sensible conversation on graft day with (now former) consultant was that he doesn't think the light sensitivity was anything to do with the eye at all!!
He thinks it's a case (I'm not the only one apparently) of the eye being fine (behind the cornea, obviously!) and what's causing the hypersensitivy to bright light in a problem in the optic nerve. Or possibly the part of the brain that processes the signals from the optic nerve.
Which would put it not into his domain at all, but that of a neurologist.
COuld he, I asked on the day, refer me on to a neurologist directly? - and I swear blind (!) he said Yes. Though it has occurred to me to wonder whether he meant it or was just trying to get me to shut up, be a good obedient little patient, and lie down and be put to sleep.
Hah!
Rosemary

ARRRGHH bright flashing lights. i recently went to a Joe Cocker concert and they kept accentuating the music by flashing bright lights into the crowd. I couldn't leave because i would have ruined for my boyfriend and parents, so i spent the whole concert looking at the floor- i WISH i had my singlasses with me that night.

Worse symptom, eyes tiring quickly. Finish a day at work absolutely shattered, and that's with regular screen breaks.

It's not a symptom as such that gets me down (although many do)...but the whole having to explain KC thing.

There was a quite brilliant piece in the last newsletter about KC being a part-time disability. I'd never thought of it like that before but the author was absolutely correct. It explained how it was really hard to describe to people how badly your eyesight is affected without lenses. I guess it's understandable too. People see you normally with lenses in and with decent eyesight. They could easily be forgiven for thinking there's nothing wrong with you. They may not even know you're wearing lenses!!

With lenses out you look the same, but you're blind as a bat and can't drive, go to work or even interact in the same way as you normally would.

And then it's up to you to explain this really complex condition/disease Keratoconus to them in the two or three seconds that you have their attention...and they've probably already made their mind up that you are exaggerating...so usually you don't bother too much.

It's that having to explain yourself, when you're feeling low and vunerable anyway because you can't see well.

That's what I hate and how it affects me most.

You are so right Paul...
it's they way people think you are making it all up-- 'i mean why don't you just wear glasses???'