Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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PolarBear427 07/03/2013

I just discovered that Dermatomyositis falls under the MDA. I went to their site and did some reading. However, I'm wondering, do any of you have any experience with this? Are they a good resource? If so, what for? How does it work? I saw that they have their own doctors that you go to? They have clinics?

Thanks! I figured it was better to start here with people who would know the "scoop." :)

deleted_user 07/03/2013

MDA has been great for some and difficult for others. Depends on the docturs staffing your local chapter. I haven not heard good things in Northern CA. HOpe they can help you.
they can do all the diagnostic work and in some sites provide needed equipment and supplies on loan when needed.
My best to you, Shawna

deleted_user 07/05/2013

I think they are probably the best resource out there. I think the myositis foundation is a bit too politically oriented to be taken seriously. We used to have a bunch of researchers down here at UT Southerwstern in Dallas. They all got offered fat research jobs by the Mayo clinic because the MDA suspects a link between inflammatory diseases like DM and MDA. Just about the only one who stayed is my rheumatologist who is also a professor of immunology over there. I got SO lucky. I just happened to land in his office. I read about some of you guys who went years with DM. I was diagnosed two weeks after my rash presented.

deleted_user 07/08/2013

I don't know about the Myositis foundation but TMA the Myositis Association is great. they are funding research and keep articles available and have a conference every year with 20 or so myositis related docs who come and present new findings. I found them to be so very helpful. Myositis.org.
The website is not well organized at the moment but the organization is very well respected. many of the doctors on the board take personal emails from patients and help them get connected...

What do you mean Bruce that they are too politically oriented to be take seriously???

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