UK Keratoconus Self-Help and Support Association

Greets;

I went to Specsavers about 4 years ago and the optometrist 'noticed a slight ireegularity' and decided to get it checked out. I consequently went to the Eye Clinic in Wakefield. The usless consult there ummmed and aaahed and said 'You may have KC, but we'll check on you in 12 months and see how it is.'

12 months later i moved to huddersfield, and missed my appointment in wakefield. Went back to specsavers, and they referred me to the eye clinic here.

After a lot of waiting, i finally managed to get an appointment after about 18 - 24 months, and that was in Feb this year. The consultant there wanted to conduct an Orb scan, but due to lack of staff he said would wait for 6 months until my next appointment. I went into my appointment last week and the consultant started out by saying (bear in mind i have had no *confirmed diagnosis*)....

"Well you know the strange thing about Keratoconus is...."

So i guess i was a little shocked to hear that. Anyways i had my orb scan and the doc i had just seen was right on the money. 2 strange peaks were shown on the scan in my Left eye. Then the nurse shocked me a little further.

"So the doctor explained you might have to have a cornea transplant or a lens fitted to your eye...?"

Maybe this open-ness was down to wearing my work's uniform (as i work at the same hosipatl and had gone off ward for my appt), but still it blew me away a little bit. I was shocked by this sudden load of news. First a diagnosis of KC then the candid tale of eye surgery at some point.

I've been told i need to see them next year, and if my eyesight worsens rapidly to contact them for an emergency appointment, and they'll fit me in straight away. (For the clinic i waited 18 months for an inital appt!!!)

Anyway, they call me Dan, and I have within the last week been diagnosed with KC so I'm here and just wanted to introduce myself.

Dan

Dan,
It sounds like you've had a bit of a shock! I hope you have better appointments from now on!
But welcome to the forum; I am sure you will find it invaluable as I have.

Hi Dan, and welcome to the forum, and thanks for sharing your story.

In the words of Douglas Adams:

DON'T PANIC!

You've been introduced to KC in the same way as many of us: ham-fisted, with the graft/transplant route being mentioned up-front.

KC is different in all of us, and only about 5-10% of us will ever need a graft. If you do, it's likely to be just in one eye.

KC also seems to progress more slowly the later it develops, so if you're in your 20s or 30s now, you're less likely to progress to needing a graft than if you're a teenager.

The group has a large amount of useful information which we can let you have - just let Anneknow your details.

I think John is back to full strength as he has beaten me to a reply

In addition to conatcting Anne, have a look at the whole site;

KC Group Publications

What is KC

Treatment options explained


Frequently asked questions

Everyone here is very helpful, but I will warn you, many regular posters such as myself are far from representative of the general KC population, so do not feel that your KC will get real bad.

As John said 'Don't Panic'.

Ask any question you like, you will be sure to get a response, some may sound odd, but you will be surprised at how effective some of the suggestions are