I am just wondering others views, but do others feel it is important to raise awareness for Dermatomyositis, as they have for Cancer, and such? If so how would you suggest going about raising awareness? Thank you! My mother has this disease. I would love others thoughts.
I agree we should have some type of awareness done for the diseases. I was diagnosed in 2011. I have dermatomyositis and polymyositis. It's hard to live with. Pain all the time. Soreness all over. Over the past 15;years I had been going to a back doctor thinking that was my problem. The world needs to know.
Hi I was diagnosed with dermatomyositis in 2014 and my life
Has completely changed . I have felt very alone & scared at times & would have really appreciated some support but as this is a rare condition havnt found much !! I've just stumbled across this site and got really excited to find in not alone . I completely agree that awareness should be raised but have no idea how to go about it . I will watch this space . Best wishes to you and your mother
Diane
I think it's important for people to understand what it is. I post articles I find on Facebook and Twitter. People just don't understand it or the seriousness that it can be. I am not sure how else to raise awareness for it. But I really do think people should understand it. Especially those who know someone with dermatomyositis.
I totally understand the feeling alone thing! Instead of support I get so much criticism. I was really happy when a friend led me to this site!