UK Keratoconus Self-Help and Support Association

Hey to all,

Name's Ian and I'm 28. I was diagnosed with Keratoconus a few years back and have only just been referred to the local hospitals eye clinic for treatments. However according to the senior Optometrist in the hospital (Who, might I add was very rude and abrupt) I was diagnosed back in 2001 with the condition; but she put my lack of recollection down to "being sixteen and sixteen year old's don't listen when their spoken to" (Those were her exact words)

I was told by a large optical chain that I wouldn't be able to wear glasses any more as they can't create a prescription strong enough to stabilize my vision (And I've personally found that within two weeks of getting a new prescription it's pointless wearing them as my eyes adjusted to them too quickly.)

I'm on RGP now, something I'd been told by the woman I mentioned above I would be unsuitable for because of what I've been told is a strong blepharospasm in both eyes. However I asked for a secondary opinion and she booked me to see her colleague and I find the new Optometrist to be so much better. She has the patience of a saint and spent well over two hours on my fitting appointment helping me to get the lenses in and out. I've been on the lenses now for a month and I can honestly say that I've noticed a dramatic improvement to my overall vision, it's like I'm looking at everything for the first time.

I joined the site (I'm not sure why I've never looked for one before in all honesty) because it'd be good to learn as much as I can about this condition, what it will stop me from doing and what aids are available to help with the stabilizing of. It'd also be really nice to speak to other sufferers as I find that people just don't seem to really understand (My closest friends all googled it and kinda know what's wrong but most of the people I know just look at it that my eyesight is really awful)

It'd also be nice for my family to understand the condition as my parents were told by the Optometrist that eventually I'll go blind; I don't think they were too impressed by that statement.

Hi Ian and welcome to the forum,
Congratulations on finding an optometrist with 'the patience of a saint' - just what we KC-ers need! And it's good to hear that you're getting on well with your rgps. Hopefully you'll be able to forget about the bad initial experiences - not what anyone needs when they're getting their head round having an eye condition no-one has ever heard of.
As well as this forum, where I'm sure you'll find lots of support from others who've been there, we also have various information (a booklet about KC, DVDs of conferences we hold, regular newsletters in which we update members on new developments) that we can send you if you e-mail your postal address to anne@keratoconus-group.org.uk
Many people with KC manage well with contact lenses and are able to keep restrictions on what they do to a minimum. There are now far more options, both in contact lenses and other interventions, than there used to be when I was first diagnosed 30 odd years ago, and more research will no doubt lead to more solutions.
But this is the place where you can ask about anything that's worrying you.
All the best
Anne

[It'd also be nice for my family to understand the condition as my parents were told by the Optometrist that eventually I'll go blind; I don't think they were too impressed by that statement.]

I am not a expert but if You have KC You cant completely blind, I mean Your eyes open and You see darkness.
I done lots reviews and emails with many experienced doctors and professors in KC.
One of them told me that '' Human with KC is a blind man who can see light in darkness but can`t recognize own face in mirror''

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