Quicktopic posts: May 2002

[Emma Reilly]

Hi everyone, Janet, Freddy and Anne. I would like to say a sincere thanks to you all for putting in the effort to produce the letter. I can see the benefits already! I think my teachers are actually taking me seriously for a change. I was sitting at home last night and got writing. Here is a poem I wrote about KC.

Imagine a life and you barely can see,
Then remember the people who have KC,
A condition I have which affects my sight
Not only at day, but also at night.

I struggle at school,
Get help from a few,
But for the person I am,
Only perfect will do.

To look at me, you can see no wrong,
But inside the disease is fighting so strong.
The lenses I have fit so bad,
That at times it is hard not to feel sad.

Now imagine a place, deep in your mind,
Search for that something you long to find.
Finally it's there, just in your grasp,
Til you open your eyes and it's gone just as fast.

My dream is my sight,
So perfect and clear.
Yet when I wake in the morning
It's simply not here.

My wishes and dreams,
I cannot forget.
But maybe in time,
My wish I might get.

I think alot of people will be able to relate to this, it certainly helped me to write things down. Gotta go now, bell has just gone and I can't be late for German. Chat to you soon

All the Best,
Emma

[Clive Sidney]

Hi all. I'm Clive and I was diagnosed with KC about a year ago, but it only seems so far to affect my right eye badly, so I haven't had anything done about it. I am 36, and am also deaf, so it is getting hard to communicate with anybody as I use lip-reading for my hearing!
I have just joined to see what is going on - not to complain or look for comfort. Eventually I will get another appointment at the local hospital (they are VERY slow) to see if more can be done.
I am glad to see that there are improvements being made in the medical correction for KC, and hope that this mailing list will keep me updated.

Best wishes
Clive.

[Janet Manning]

Hi Emma,
Fab poem! You have managed to capture the feelings beautifully - great insight.
Love Janet

[Amanda Stigle]

Hi Emma
Fantastic news, well done for inspiring the support you received! Your poem was spot on. I am sure it has struck a cord with alot of people with KC, and I have to admit it brought tears to my eyes. No, I can't blame the contact lens!

[Sue Ingram]

Hi Vieky (697), I just want to try and put your mind at rest: I was diagnosed with KC when I was 15, however, I now believe that I had it for at least two years before that, if not more. I am now 41, have not had a graft and am still wearing contact lenses - sclerals and rgp corneals. I also suffer with allergic conjunctivitis which does not help at all with wearing the lenses. I know that everyone is different; some people are like myself and others may have to have a graft at an earlier stage but I think the only way of dealing with KC is to take each day at a time and not to think too much about what 'might' happen. I know it is a shock to you that your son has KC but he will find his own way of managing it and over time will get used to it - as we all have had to! You will need to find the best option (might be a series of trial and erro) for Gareth and the one that is most comfortable for him. If you or Gareth wishes to give me a ring any time to have a chat, then please email me on sue.ingram@virgin.net and I will give you my telephone number. Take care and keep smiling! SUE

[Amanda Stigle]

Hello Clive
Welcome to the site. It must be extremly difficult for you being deaf and partially sighted. Sign language is not much use to you either! Have you managed to get new lenses quickly when required?
You can e-mail me direct astigle@aol.com,details on contacts page.

[Dhiren Nakrani]

Bravo Emma, wow what a great poem! True talent! Good luck with your revision and also to every1 else who has exams comming up, its tough but its all worth it in the end!

Dhiren

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[Laura Thorne]

Hey to all who might read this, i've just been diagnosied wit KC. I'm just about to take my AS levels so I was pretty worried that my condition might worsen to such a degree that it would affect my work, but i'm glad to hear that I'm not just the only one worried abput what the future could bring for my sight. I hate the thought that I know it is going to get gradually worse and i'm not even going to notice. I spent most of my time last night researching various aspects of KC, so much of 'typically symptoms' sound like me!!! It has come as a shock, but i would love to hear from anyone. One thing that i am worried about is being able to drive, i turn 18 this september and don't want to be relying on buses for the rest of my life - does anyone think i might be affected

[Laura Thorne]

/683 Emma Reilly - I had my german oral on the second of this month and i know exactly how you feel about the stress of exams and KC. Ive just been diagnosed with the condition - well within the last 6 months and the thought of not being able to see exam papers and white boards in lectures at college really worries me. YEah you can laugh about 'being blind as a bat' but not being able to see my friends faces when i want to meet them out of college upsets me. I hope that your german oral goes well.
Laura Thorne - Dinkie@doughnuts.fslife.co.uk

[Dave Hamblett]

Hi To Emma, Laura and all
I was diagnosed with KC a few months ago and had to wait for my appointment, while i was waiting my glasses became all but useless as i sat at the front of every class at Uni. squinting, in the end though i got my rgp lenses and all has become well again. its amazing how much better my work has got now i can see what they are writing.!
I know how you are all feeling with exams coming up (i have 4 2nd Yr exams on my degree to get through!) but all the best to all studying for them. Dave

> -----------------------------------------------------------------
>
> From: Laura Thorne Time: 07:02 AM
> Hey to all who might read this, i've just been diagnosied wit
> KC. I'm just about to take my AS levels so I was pretty worried
> that my condition might worsen to such a degree that it would
> affect my work, but i'm glad to hear that I'm not just the only
> one worried abput what the future could bring for my sight. I
> hate the thought that I know it is going to get gradually worse
> and i'm not even going to notice. I spent most of my time last
> night researching various aspects of KC, so much of 'typically
> symptoms' sound like me!!! It has come as a shock, but i would
> love to hear from anyone. One thing that i am worried about is
> being able to drive, i turn 18 this september and don't want to
> be relying on buses for the rest of my life - does anyone think
> i might be affected
> ------------------------------------------------------------
> From: Laura Thorne Time: 07:24 AM
> /683 Emma Reilly - I had my german oral on the second of this
> month and i know exactly how you feel about the stress of exams
> and KC. Ive just been diagnosed with the condition - well
> within the last 6 months and the thought of not being able to
> see exam papers and white boards in lectures at college really
> worries me. YEah you can laugh about 'being blind as a bat' but
> not being able to see my friends faces when i want to meet them
> out of college upsets me. I hope that your german oral goes
> well.
> Laura Thorne -
> Dinkie@doughnuts.fslife.co.uk
> ------------------------------------------------------------
> _________________________________________________________________
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>


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