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can anybody tell me about Dermatomyositis?

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Old 07-07-2012, 12:19 AM   #1
Join Date: Jul 2012
Location: redwood city, california, usa
Posts: 1
cmv18 HB User
Question can anybody tell me about Dermatomyositis?

My father was diagnosed with this disease for a little over 2 years now. He's had two episodes of it, the first being not bad at all, while the second one causing him severe muscle pain, a blood clot in his leg, and nearly killing him

He managed to survive thank god, his rheumatologist ended up giving him Rituximab this last time, and thankgod once again he had no bad side effects to it.

My father means a lot to me, he's always been by my side during good and bad times. He's never lost hope in me, even when i didn't graduate highschool, he still believed in me that i would do something with my life. I am about to start college and will be moving away soon, so leaving him really worries me about his health. He's taking medication at the moment (cant say which since idk) and seems to be a lot better.

Cand someone please explain to me what this disease really is? what causes it? is it something genetic? any possibility i can get it? and is their a survival rate for this? Because i really don't want my dad to die on me :'(

and if you can please tell me how your story is if you have this disease, i really want to hear something that can give me hope.

Last edited by cmv18; 07-07-2012 at 12:20 AM.

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Old 03-07-2013, 10:24 AM   #2
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Join Date: Jan 2009
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BluBird HB User
Re: can anybody tell me about Dermatomyositis?


I was diagnosed with Dermatomyositis in 3/09.

Dermatomyositis is an autoimmune disease. It means the immune system turns on your on body, in the case of myositis, it attacks and destroys muscle tissue. It's a very rare disease and they're not sure of all the causes. There are several forms of myositis - dermatomyositis - which can cause rashes & muscle weakness, or just skin issues, polymyositis - no skin involvement and it is a bit different in how it attacks the muscles, inclusion body myositis and the junevile myositis.

try to communicate with others - you will find that this is such a rare disease, myositis patients normally know and understand more than most of the Rheums out there...

Last edited by moderator2; 03-07-2013 at 10:30 AM. Reason: posted disallowed websites

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