UK Keratoconus Self-Help and Support Association

Me again!,
I've been feeling a bit let down today when I think that I've seen specialists etc. about KC for over eight years and not one of them has mentioned or suggested that I might get more information or help from sites such as this one. I admit that I haven't asked any of them if such support was available but surely it should first come from them not the patient who is new to it all! Or are they not allowed to recommend!
Ok I am reasonably intelligent and do surf the net and could easily have stumbled on this site before now. Until now something has stopped me from looking. I think I was afraid of what I might find out.
How did you first hear of this group?

I found out when it was in its infancy from Ken at Moorefields......than there was that leaflet they have on the desk at Clinic Four....back then this sight wasnt as popular (obviously) and so a post here and there every week was expected...now its alot better as more and more people are aware of it...

Funny though...you kno i have NEVER met a person with KC either..........in my working/social life never......every lucky git just wears lenses to change the colour of there eye, or cuz it makes them look. good.....wish I could do that LOL

Well as soon as i was diagnosed... being in the IT industry... i went off in the digital world searching for answrs... questions?! description?! Anything.. to make me understand what the hell the optom just said.!
i had this yellow post-it which i had scribled the funny word on!
googled about and read a few pages.. found this site ... kept visiting back... and just reading... as time went on.. i could see this would help.. just talkking to people with the same condition!
I'm sure we've alll had it, when trying to explain to a non KC'er how and what it all is!
ARRRTGHGHHGHGH!
as time went on.. contributed.. and here i is!
'tis great!

Laters

Pure bad luck for my part (joking):lol:

Just the usual occasional reminder that we're not just a web forum, but a fully fledged support group. Visit the home page to read more...

Well I found this site after going to the kcenter.org website when I had googled 'keratoconus', it was top of the list because I had a rather obscure question to do with corneal transplants, anyway a member there mentioned here so I followed the link.
Out of curiosity I googled 'keratoconus' to see where this site is listed and it was on the 2nd page of results.

Until I was told that I needed a corneal graft I had already, years ago, searched information on keratoconus so I knew what I needed to about the condition but, either because they were off the beaten track, not popular, or none existed at that time I gave up trying to look for forums or self help groups back then, until now as I felt way more compelled to search out more info and ppl who had it.
My GP, isn't familiar with KC but my consultant at the clinic has been very helpful. Most, around 90%, of what I understand about the condition comes from asking a ton of questions over the years. I believe many in the medical community presume knowledge and its up to us to ask the questions of else they treat our silence as understanding, rarely will a doctor volunteer information as such, I don't think they're not allowed but I do believe they think we already know if we dont ask.
I see alot of posters and information dotted around the clinic but none of it is KC specific and I'd like to try get that changed now. Last year I had offered my services as a graphic designer free of charge to set them up a website, and maintain it for them, to generate information on the various eye conditions etc, but it was blocked by the general hospital administration due to it being a patient driven initiative, which didn't only annoy me but also my consultant greatly who was very eager about it, I was even invited to a general clinic staff meeting where I took notes and presented my designs, it was all go until late last summer and now, none of the staff there for various reasons are allowed to take part in the initiative at all.
So that put the breaks on me developing local interest until I found this site and I am wondering if I can change tactics and wing a sister website by myself, make mention of the clinic, reporter style, and get some leaflets and info posted down at the clinic but include this website and its wealth of information as a recommended resource for KC suffers especially.

But anyway, KC, its good to talk

I too came across the site by accident really.

After having been diagnosed back in Nov 2000 I searched the net and only seemed to come up with the US sites NKCF etc.

Then in May 2002 things started to progress rather rapidly with the KC and I was at home with some time to spare and came across this site.

At the time I know I felt let down by the NHS, there seemed to be very little info at the hospital and whilst I had lots of questions appointmnet time was limited and I always seemed to come out and think why didn't I ask .....

Since then things have picked up, probably due to my attitude, I ask lots of questions and make sure I am prepared before I go, with a list if necessary.

My GP does not seem very aware about KC and nearly 12 months ago stressed me somewhat whe he casually told me lots of people have KC and are ok. Well maybe so and maybe the context of the comment was not as it should have been made/taken however as at the time I was really struggling it didn't help much.

I am sure there must be lots of conditions that are not well known about however, I do at many times find myself wishing that KC had been more widely mentioned.
Until getting it I certainly had never heard of it. I still have not met anyone yet who says, yes I have heard about that. And when I explain how challenging it is to make tea in upside down mugs and be able to tell if bacon or toast is cooked at meal times I get very funny looks as not many understand and rarely remember.

I think most of us find we have very similar challenges to overcome such as limited wearing time and comfort, not to mention getting others to realise how our world can often look.

Susan

when i discovered i had KC, i just did a google search and.....hey presto!! here i am!!!

Just to add to John's advice about looking at the home page - one of the things you'll find there is a flyer (think it's flyer 2) which you can download and use to spread the word about this support group eg by taking a few copies to the clinic you go to and asking them to display it in a prominent place. That way people without access to the internet also have the chance to find out they're not alone!
Anne

Anna

There was another more "attractive" flyer created by a member.....is this something that could be used and made availae via the homepage subject to its suitability?

anything that helps I guess

Jay