Hi my daughter was diagnosed with JDM in 2012 when she was 4 she is now 9 and it's nearly impossible finding any forems or support groups to keep me sane due to JDM being so rare. It gets very frustrating to say the least. I'd love to connect with fellow parents of JDM children or even adults with dermatomyocitis so feel free to message me and connect! Thanks :)
I am 17 and have had dermatomyositis for 5 years. i know a lot about medacines and alot of others stuff, seeing how i have tried many of them. any questions email me at ***@****
We just found out that our daughter has dermatomyositis. She has been ill since Oct of 2007 and we came across a good doctor that was able to recognise this disease. Her muscles and skin are being attacked and I feel helpless. I am new to this and found your open discussion question from a few months ago. Have you had any luck in finding a group and if so, could I join? I feel alone in this. Thank you