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Inspire

Last post 06-06-2008 11:33 AM by writer lady. 0 replies.
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  • 06-06-2008 11:33 AM

    Inspire

    I recently came across an online health community with roughly 700 groups discussing topics ranging from alternative medicine to lung cancer, from sexual health for seniors to pregnancy and childbirth.

    What I'm finding valuable is a group sponsored by NORD, the National Organization for Rare Diseases. I was diagnosed in 1994 with a rare disease, and have still never met face-to-face with another person who has it. The doctors I've seen at Mayo in Rochester estimate there are only  2,000 people in the world who have this disease. It's been life changing to finally, finally be able to talk to others who have it.

    I've been very fortunate in a number of ways: thank God, my case has been very mild in comparison to that of some of the other people I've met online; I've been in a near-total remission for four years; and, it's been rewarding to be able to give hope to some of the others who are newly diagnosed, or are considering a high-risk treatment like the one that allowed me this protracted remission.

    Even if you don't think there's anything for you on this site, I urge you to familiarize yourself with it. Bookmark it. You may have a friend or family member who can benefit immensely from it, now or in the future.

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