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[withnall]

People can be so inconsiderate sometimes, my sister phoned me and after 10 minutes i told her how my scan went and that i hope the contacts will work. Her attitude was oh well, tehn you have to go back to glasses.

It is not as simple as that. I wish they could understand. It really annoys me. There should be more awarness of KC made

[GraemeH]

Someone I am close to has a very visible disability (the wheelchair kind of gives it away!) and yet still meets people who just don't get it and come out with some of the most unbelievable comments. Some people are like that I suppose. However I believe people like these are in the minority.

My (albeit limited) experience of explaining KC has been hampered by the lack of widespread knowledge about it, but I've found that by explaining exactly WHY contacts will work where specs won't helps. Most people are not aware that specs and lenses don't do EXACTLY the same job and this needs to be explained, several times in some cases.

As for spreading the word about KC, most conditions have a famous sufferer somewhere which really helps explaining things, e.g. Motor Neurone Disease and Stephen Hawking. What do we have?

The Hubble Space Telescope!

Think about it - its primary focusing surface is the wrong shape and it needs a contact lens fit before it can see clearly!!!!

[Susan Mason]

Well ... we do have a famous person who has KC .... that is if people have een as sad as me and watched american TV in the past.

I think the program was called 'Chicago Hope' and the actor played Dr Jeffrey Geiger. I seem to recall he was a bit batty 'character wise' that is.

I am not familiar with him in anything else and must confess I only watched it for the other hunky looking docs, many years ago as you will appreciate.

The actors real name is Mandy Patinkin and between 1997 and 1998 he had 2 corneal transplants after several years of problems with KC. He had started with problems vision wise in 1982 and then wore hard lenses for 15 years after the KC was initially diagnosed. That is what the article said anyway.

I will try to look for it however it was Sept 2002 when I found it on an american website.


Maybe other people know of others who have KC ????


Susan

PS didn't know about the telescope though!

[withnall]

I use to love that show. It has been so long since it has been shown on repeat here that i can not remember that doc .

That is the thing, if someone famous came on tv as a KC Patient, then everyone would be all ears to it.

I hate driving at night time. Day time is ok. With any luck, the contacts will help

[Susan Mason]

Have found some links to articles that report on Mandy and his keratoconus.

http://health.discovery.com/premiers/me ... mandy.html

http://www.febo.com/eyes/mandy.html

http://www.usatoday.com/news/health/spo ... cornea.htm

I hope these work, or my friend John can mend them for me!

Alternatively you can just enter Mandy Patinkin, keratoconus on a web search.

Susan

[withnall]

Susan

Tahnk you so much for the links. I have read one of the articles so far and it is quite good.

Great to see we are not alone. There should definetely be more awareness made in UK and Ireland.

So far i am in the mild to moderate bracket and it has only begun in the right eye in teh last 6-12 months.

How are you doing with KC. Have you found a good lens. That is half the battle

[paula hardman]

I don't think the lack of understanding is limited to KC - a lot of people have difficultly believing what they can't see or haven't experienced for themselves. I used to get the same sort of reponse when I had back problems (caused by falling down stairs a couple of times before I was diagnosed with KC and didn't realise I was misjudging the distances, nowadays I never let go of the rail) - you look perfectly normal and healthy so how can there be a problem?

[Anne Klepacz]

Ronak - as well as this forum, we have a mailing list membership of around 850 people who automatically get any literature we produce. Our second conference in 2003 was all about coping with KC at work or as a student and included lots of interesting information and experiences of some of our members. We've produced a booklet of the conference - if you'd like a copy do e-mail me anneklepacz@aol.com
We also hope to have a leaflet about keratoconus which people can give to their employer available by mid June. We'll post that on the main site as we've done for the student leaflet.
Anne