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Trisha Torrey

Rare Disease? Want to Find Fellow Sufferers?

By February 11, 2009

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Suppose you found out you had a deadly disease, and no one you knew even knew anyone else who had it? Even your doctor had never treated it before? And no one could provide you with ideas that would really work to treat it?

I've been there. I was diagnosed with a lymphoma so rare, that a 3 inch thick volume about non-Hodgkins lymphomas had only 3/4 of one page devoted to it. According to that book, fewer than 10 cases had been reported in the previous decade, globally. Yes, that rare.

But as you may know, I didn't really have that lymphoma.

I did go through the trauma of the symptoms and the diagnosis, though. And I can very much relate to not being able to find others who had been diagnosed with the same. You begin to wonder how anyone ever put a name on it to begin with.

Which only shines a light on the beauty of the World Wide Web and its ability to bring like minded individuals together -- including fellow suffers of these very rare diseases.

A story in the Washington Post tells the tale of a man who suffers from a disorder called Clarkson Disease. In effect, an attack may bring on his death within hours. He was able to find four other people with the same diagnosis to network with. Sadly, they have all died in the past two years since his diagnosis.

Now there is a website called RareShare htat helps people with rare diseases to network with others who have the same diagnosis. It's free. Remembering how lonely and isolated I felt with my rare diagnosis, I can only imagine what a relief it is for people to find fellow sufferers.

Finding others can help with more than just the emotion of your diagnosis and treatment. You can learn about experts, clinical trials, new treatment and testing and more. Support groups can be an invaluable part of your disease management.

Take a look at Rare Share, the support networking site. I hope it provides you with some relief in sharing.

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