Hi - Im New To This - My Story

[Mark Osborne]

Hi

Where to start? I live in Ipswich - and im 23. I only got diagnosed with KC bout a year ago - i had several appoinments at Boots optitions, but no one could work out why the vision could be corrected, but i had this ghosting effect that ur all familiar with! They sent me to the hospital and a senior consultant carried out a tomography - and bingo he had worked out why.

At first there were mixed emotions, in one hand i knew the cause and he offered me, if you like fixes - but in the other was uncertancy. So we proceeded - first appointment to fit Riggid Lenses - went okay, was unusual but found it hard, so went to anoter appointment, etc etc tweek this, tweek that and ive decided not to use them - i think people will say that im giving up but my main problem is im an electrician and i work on building sites, dust etc, and the occasional bit of grit in eye dont help. When i had them in no matter how hard i perservered, i got watery eyes, itching, pain, kept slipping, and i really just cant wear them. Told my consultant this and he said he sympathises, he has tried them and could get on with them and he has noticed a trend of Blue eyed people not being able to get on with them as well? I Can cope with glasses, a few perscription changes, but for me this thing that annoys and frustrates me is the car head lights, or the sky repeating over peoples faces, or basicly seeing two off most things - that is what gets me. I get upset sometimes, and down about it - but i cant bear to think how some of u with worse cases must feel?

So here we are now, not alot in a year, i can cope with glasses - i dont think im no-where near as bad as some of you - but reading your stories it scares me. About being blind before your grafts etc etc, and websites talking bout optic nerves coming away, and glaucoma.

My Consultant must be the most optimistic guy ever - he has said it very rarly caries on gettin worse past 24 yrs old, and sorta tails out after 6 yrs of having it, but your stories, and websites show cases of people going in to there 30's plus?

Final thought, my last tomography has showed that nothing has changed in my left eye ( my good eye) for 6 months(since my last image) once again ive been told its vary rare that it will start up and change again, is this true, according to DR it has stopped in that eye?

Thank you for listining Mark (sorry for any spelling mistakes!)[/b]

[lou]

Hi Mark

Thanks for telling your story and sorry to hear you have KC im sure the last year has been a rollacoaster ride for you and we all know exactly how you feel.

I know its easy for me to say this (as many people did to me) but try not to worry and whilst reading other peoples stories gives you an insight into what might happen yours may not come to that.
I have suffered with KC for the last 10 yrs and i maybe one of the extreme cases (registered blind) but its not just been the KC alone i have other health problems that contribute/aggrivate it so maybe with out them my KC might not have got so bad.

I have only just registered with this sight and i have found it so helpful and all so kind
i wished i had found it years ago.

please take each appointment as it comes and try not to worry about what might happen and if you are unsure about anything there are many people here that will be able to explain it to you as they have to me

Take care

with luv

Emma xxx

[debbieo]

This site does seem scary, but as one of the moderators kindly pointed out when I joined, it's only usually the people having a bad time and needing support who post - that's why the site can give the impression that KC is worse than it is.

There are hundreds of people out there with KC who are leading normal lives with perfectly adequate glasses, lenses or whatever, who don't worry about their KC and who don't see the need for a support group. So we don't hear anything at all about them.

I'm very lucky in that my KC is extremely mild - can use glasses and just experimenting successfully with RGP lenses. Some of the other stories on here make me wince and cringe and really scare me. But I've been told it's quite likely that none of it will happen to me.

I'm just hanging round here because I like these guys.....

[John Smith]

Oh Debbie, you say the sweetest things!

Mark,

You may find that RGP scleral lenses could be a solution to your troubles. It sounds like the problem you had with the regular RGP lenses was around movement and dust - scleral lenses don't move (there's nowhere to go) and are impervious to dust as the lens is so huge.

Next time you see your consultant ask if he thinks that a scleral may be more suitable for you.

[Anne Klepacz]

Welcome Mark! As Emma and Debbie have said, please don't get freaked by some of the posts on this forum. The people whose KC doesn't cause them any problems (and there are quite a few of them!) very rarely post on this forum, so it's easy to get the idea that KC is all misery! Just a thought on your problems with wearing lenses though. You'd probably get along a whole lot better with scleral lenses - they're the lenses which cover the whole of the eye, so you don't get bits getting in behind the lens and ideal for people like yourself who work in dusty conditions. So if you do find that glasses aren't doing the trick, do ask about sclerals. Not all hospitals have them as an option, so you might need to go elsewhere to see if they suit you if your clinic doesn't offer them.
Anne

[mike scott]

first of all yes debbie you are a sweetie

mark
when you first get diagnosed the first reaction can be to go into a tailspin of panic.

DONT

i'm sure your treating doctor knows what he is talking about, however KC can be un predictable, the main thing is to step back and deal with 1 issue at a time and 1 day at a time. this condition of ours can be very anoying but its all about overcoming the challenges it presents and not letting it beat us.

i have no experience myself of scleral lenses and personally have gone beyond the stage where they would help me anyway.

i was a precision tool maker for 18 yrs and earning a hell of a lot of money, in the end i had to put my health and happiness first and changed my carreer path. i now work in retail , which is lower paid which hurt a bit but i am happier non the less and i am better looked after by my employer and my eyes take far less strain too.

the hard part of KC is accepting some of the limitations it can impose, ie i would have loved to have been a bus driver and can actually drive 1 , unfortunately i will never be allowed because of the severity of my sight.
that would also follow for trains or trucks.

remember if one door closes another opens . all part of the rich tapestry of life my friend

good luck , stay positive
mike

[Mark Osborne]

Hi

Thankyou all for your knid replys - ur words of encouragement really do help. And i guess ur right - people only really search for an answer if they have a question, and people that are getting on with life dont have them questions to be answered - if that makes sense lol.

I am 100% gonna prompt about the lenses u are suggesting, are they rigid or soft? I found with the rigid ones that as i blinked they lifted up, then slid back down again - strange feeling.

So i guess i would ask are all my points in my original post true? ie - once its stopped it wont start etc - the consultant seems quite sure, he also said which i found interesting : - after a graft - its extremely rare for the KC to strike that eye again, and the only time he really sees this happen is in people with Down Sydrome.
Be good to see all your views on what i have put, coz u can get a bigger picture and understanding from many rains rather than one brain.

Debbieo - u say urs is mild, if u dont mind me asking how old are you (i wont tell - promise )

Emma - you say u have registered blind -how much can u manage, ie - doing a job etc, i hand on heart am sorry to hear just a snippet of what must me a hard time.

People everyday dont appriciate how much our sight and i mean 'our' as in the whole world, important sight is, and i admit when i was young i took it for granted - grinding stuff, and cutting stuff with no goggles at work. Opens up a whole new perspective on things genrally i feel.

Thanx again to you all

[mike scott]

mark
as i have said KC can be very unpredictable

i was diagnosed 22 yrs ago and have worn rgp's for 21 of them. my right eye touch wood has always remained stable and i have very good corrected vision with it. my left eye has always been the worse and has had periods of stability for a few yrs at a time then progressed, for the last few yrs and also at present it is very active , thats why i now need the transplant. i suppose because my right eye is still so good , i can appreciate why this could be a good time to have the left treated. my age is now 40.

KC is a very individual condition , and everyone of us has a different experience with different management solutions, what binds us all and makes us "special " is the KC itself.

dont panic though as very few people progress to the transplant stage and can manage with various types of lens all their life
i'm not trying to scare you but just trying to offer you the realistic viewpoint

enjoy everyday as it is

mike

[John Smith]

once its stopped it wont start

My understanding is that once KC has stopped progressing, it can (but does not always) start progressing again at any time.

after a graft - its extremely rare for the KC to strike that eye again

Absolutely. It is indeed incredibly rare for KC to strike in the same eye again after a graft. It does happen, but the odds are probably less than 1 in 1000.

[Andrew MacLean]

Mark

It is good to meet you!

I found sclerals the best advantage: no dust problem, no 'shift'.

I deliberately waited until I was blind before I had my first graft. I did not have to wait that long.

All the best

Andrew