UK Keratoconus Self-Help and Support Association

Hello, I'm new to this site and, to be honest, didn't even know that a group like this existed. So just thought I'd tell you a bit about myself and offer those of you less fortunate than me my support.

I've had KC for around 12 years (now 34) and never really looked into the condition that much - it's just something I accepted, like being short-sighted I guess, and went straight from normal eyesight (at 17) to soft lenses (more for vanity reasons than anything else) to rigid lenses when I was diagnosed with KC at 22.

Looking at threads on this site I realise that I'm a fortunate one - I have only minor problems with my lenses and for most of the time they offer me no problems at all. I wear them 12-14 hours a day, the fit is good, my eyesight with them in is (as far as I'm concerned) almost perfect and I can drive, even at night, without any issues - even a convertible.

I've had KC all my professional life and it hasn't affected by career as, first a graphic designer, and now a communications director.

It also hasn't affected my relationship with my three amazing kids, 6, 4 and 1.

The reason I found this site - and a LOT more about KC - was that I lost a lens on the weekend and came to realise how much I rely on them and how bad my sight is without it.

I've lost my LH lens several times in the past few years and, as its my better eye, it hasn't been a problem.

However, this time I lost my RH lens and it's by far my worst eye. With the lens in my left eye being not as good a fit it means that even with my left lens in my sight's pretty bad - certainly not good enough to drive etc.

As I wear my lenses most of my waking hours, it's came as a bit of a shock to be honest.

So I'm feeling perhaps a little of the frustration and worry about how my eyes will be in the future that a lot of you have shared on this site.

But I'm also humbled by some of your experiences, and the way you have faced far larger challenges than me, and just wanted to add by support to all those of you who've recently found out that you have KC and those who are having to undergo more drastic measures than just popping two pieces of rigid plastic in your eyes every day.

Hi Steve

Welcome to the site, reading your history of KC its great to hear that you manage very well with your lenses it must have been difficult for you without your lens i hope you have sorted it out.

I have have had KC for just over 10 yrs now (28yrs old) and i too only found this site a couple of months ago i have found all members lovely, supportive and full of advice.

with luv

Emma xxx

Its very reasuring to me to read about someone else who manages really well with lenses, I am going for my first appointment with a lens specialist next tuesday to discuss lenses.
I found out late last year I have KC and after xmas this year the KC got worse and started in my other eye.
This site is a great source of info and support,dont know how I would cope without it now!

Hi Steve

Welcome to the forum

Its excellent news that you manage so well with your lenses and long may this continue for you.

I agree that on occasions when the little blighters suddenly decide to launch themselves out of your eye it can be really annoying and frustrating, but sometimes after it can also be a source of amusement.

I remember when my left lens once tried to commit suicide by throwing itself out in the post office on pension day . i had all the poor little old ladies on their hands and knees scrabbling around looking for it bless them.
We found it too.

Good luck with your continuing success with managing KC and we all look forward to further posts

Mike

Hi Steve,

Welcome to the site dude!

I'm also 34 and (although no kids and a different career) have a similar story to you.

I also have "fun" with my left lens at times and often find it likes to go its own way while im out on my bike. Wrap around shades are very useful as lens catchers!

Hope you get a replacement for your right lens soon.

Ed

hiya
welcome to the KC site !! you have found a great place and im sure all will give advice and listen to your moans when you have them !! im 27 and have had KC since i was 21 i had my first graft in november and am waiting to have my other eye done. I couldnt tolerate lenses at all so yay for you, you are doing great.
again welcome
nicola
xx

Steve,

Welcome, it is good to have an extra person who I feel is more representative of the those with KC rather than some of the old lag like myself which are at the far extreme and worry we scare people off with our stories

I often have to go with vision in one eye at a time to get extended lens wear. It took a couple weeks to get used to relying on just the one eye and now when I swap eyes it is only a matter of minutes for the brain to adjust.

Thanks for the welcome everyone.

Still waiting for a replacement lens so having to work from home for a few days as I can't drive - getting plenty done but have to sit really close to the monitor!