General Question

essieness's avatar

Do any of you have Addison's disease or know anyone who has it?

Asked by essieness (7693points) February 24th, 2009

Addison’s disease is adrenal insufficiency and only 1:100,000 people have it, JFK being one of those people. I have the primary kind which is more rare. I’ve met a few people online with it, but don’t know anyone personally.

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4 Answers

essieness's avatar

I guess that’s a big fat NO. :(

Lightlyseared's avatar

If you want to meet and talk to other people with the condition the best place to start would be at the clinic that is treating you. Ask them if they know of any local support groups or if they wouldn’t mind you advertising and starting your own informal group. It doesn’t have to be anything fancy to start with you could just meet at a cafe or something, but you might be surprised and find there are other people in the same situation and are keen to participate in this sort of thing.

essieness's avatar

Well, I have done that. See I live in a town of only about 100,000 people, so I’m more than likely the only person here with the disease. My endo hasn’t treated any other Addison’s patients in this town. So far, my only success in finding others has been a small group of about 300 on Facebook and one other message board. I just thought I’d put the question out there and maybe, just maybe I’d get a bite!!

Thanks for your advice, though :)

elijah's avatar

I searched addisons disease support group and also addisons disease forums, and there were many available.
Maybe one of these could be a help to you.
Good luck!

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