UK Keratoconus Self-Help and Support Association

....your sight getting worse.

Trying to keep this light hearted as there's no point being down on KC....shit happens, this is our shit....move on. My brother's in a wheelchair after a car crash 15 years ago. I was trying to explain KC to him the other day and how much of a pain it was....he offered to swap. Doesn't seem so bad now.

I do remember vividly. I was reading a Jeffrey Archer book (can't remember the name, doesn't matter they are all the same)...and I just couldn't focus on the page.

Didn't think much of it at the time, did a lot of eye rubbing, struggled on for some weeks and eventually went to the Optician....the rest is history.

Lets hear your stories...

Yeh I remember.....it was only 4 years ago from me... I didnt notice myself totally actuallly....I know it sounds stupid, but my Dad used to tell me to stop squinting my eyes all the time, I didnt even realise I was doing it. Then I was in denial that there was nothing wrong with my eyes. Eventually went to the opticians and got a pair of glasses which were pretty useless so soon started going to the hospital!

Second time around I did not really notice a change.

My local GP even gave me the all clear to race, it was not until the night stage of racing at the Nurburgring when I litterally could not seee anything that I thought 'Oh dear!' or words to that effect

Being a racer you just keep on going and as no one radioed to pull in thought all was OK.

Was not until I was at the hospital a week later and they said 'I hope you did not drive in, you are unfit to drive with your curren vision!'

I remember at college.....I noticed over the course of 10-12 months that all i could see without sqinting on the blackboard, was what appeared to be bird sh*t lol......then I went for checkup and wore glasses for around 18 months....

I noticed over about 4 months while i would look through the Sky guide. Gradually i wouldnt see the thing.

Anyway HDTV will make my viewing so much better i hope! The sharper picture will be great im guessing. Because the Skyguide at the moment is useless.

I remember after having my first child standing in the supermarket checking all the labels on food, like you do with your 1st to try and prevent them from becoming stropy 9 year olds (it doesn't work by the way!!) And thinking i need glasses!!!
I also remember telling my hubby how car lights and street lights looked to me in the dark, and he said "thats not right you need to get that sorted"

Anne

In 1981 I was already wearing contacts and I was expecting my first baby. I wanted to have my glasses prescription checked in case I had to go without my lenses. My optician told me to leave my lenses out for two or three days and then return for a checkup - this was to allow my eyes to adjust to not having lenses in.

Anyway I went back for the checkup and couldn't read anything even with the strongest prescription so I was sent to the hospital where the specialist told me I had Keratonus and that was it, no advice nothing. When I went back to the optician he was very apologetic for not realising what I had and from then on couldn't have been more helpful, he treated me for about four years by which time the KC had advanced so much that he referred me to the D&A branch in Bristol where they sent me into a mass panic by telling me I urgently needed a transplant!

Suffice to say thanks to the skill of the opthalmolgist at the Bristol Eye hospital, whose name I forget, then Professor Roger Buckley and now Ken Pullum I still have my original corneas and hopefully will not need a transplant for the forseeable future.

The reason that the KC wasn't diagnosed originally was the fact I was wearing contacts and contacts are used to correct it. The opticians was D&A in Yeovil,can't remember the name of the guy who treated me but he also made sure my two boys had thorugh checkups whenever they went to see him.

As an extra I discovered in 1991 that my vision in my right eye, which has always been the stronger, was a bit wonky, the optician, the same as before saw something on the retina so sent me to see a specialist who turned out to be the same chap who had diagnosed my KC, this time he told me I had had a haemorrage at the back of the eye right in the middle of the retina and basically there was nothing that could be done, tact was not his strong point. I couldn't even see the biggest letter on the chart, now, 15 years later and to the surprise of both Professor Buckley and Ken Pullum I can read to about the fourth line on the chart albeit with a slight distortion but no one can offer an explanation why.

Personally I think somebody up there is watching over me.

Lesley.

I remember struggling to read the blackboard at secondary school and also going to see an optician from the age of three who said i had a lazy eye and gave me glasses. This did not go down well as my twin sister was ok and also they did nothing to make me see better!

I still have trouble reading yellow pen on a white board which doesn't help when renal patients have their name in this colour on our board at work! I do manage well with other colours though and now see well enough to start suturing hehe I also thought from a young age that all lights had halos until i put a lens in! LOL!!

I did have to sit at the front of the class from the age of 14 which was when KC was diagnosed and i started wearing lenses.

I do have bad days where i hate getting up and not being able to see without putting lenses in, but i know that this is a very small price to pay as i can see well when i do!!

The only bad thing i have is that i have recently been diagnosed with MS but i guess the less stress i have the better it will be. So i guess right not KC is not as bad as it seemed before. Hehe i'm just acquiring illnesses with two initials!! LMAO!

Sweet X x X

For me there was no wow moment of sudden shock - just a slow decline over about four years.

I remember complaining that teletext was usless as by the time I had read half a page it would move on and I would have to wait for it to come back round.

I had developed a reputation for falling down stairs and for spilling drinks and food down my clothes.

I tried to play golf on a holiday in Scotland and couldn't see the green, never mind the pin. I remember very clearly yelling at my partner "I don't know where you mean. It's all ******** green!" Then when we were driving home, still grumpy, and I got us lost (heading for Carlisle and mis-reading signs for carstairs) he said "you need to get your eyes checked woman" and he was right.

Brigid

Lesley Foster wrote:. The opticians was D&A in Yeovil,can't remember the name of the guy who treated me but he also made sure my two boys had thorugh checkups whenever they went to see him.

Ahhhh... D&A in Yeovil, I know it well. Don't go there anymore though, I'm with the posh opticians now at Harts in Princes Street. Great people, first class service, know how to charge!