Myositis is a rare, chronic, autoimmune muscle disease without a cure
Learn more about Myositis and how MSU is helping patients and caregivers
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Myositis is a term meaning inflammation in the muscles. Our focus is on the Idiopathic Inflammatory Myopathies of which there are several types, and are all classified as rare diseases. Idiopathic means the cause is unknown.
Polymyositis causes muscle weakness around the middle of the body and affects both sides of the body. Dermatomyositis causes muscle weakness as well as skin rashes. Juvenile Dermatomyositis differs from the adult form because of the coexistence of vasculitis (inflammation of blood vessels). Inclusion body myositis mainly affects older individuals. As muscle weakness becomes severe, it is accompanied by muscle wasting and diminished deep-tendon reflexes. Unlike Polymyositis and Dermatomyositis, the muscle weakness is often not symmetric and may be prominent in the smaller muscles of the forearms and calves.
Myositis resources and ways to get involved
Below are some important Myositis resources we have put together to help you educate yourself, become involved, and to locate needed resources.
We care about our members and site visitors and hope to offer you the most complete, easy-to-read information we can.
MYOSITIS, DISABILITY, CAREGIVER RESOURCES, AND MUCH MORE
YOU ARE NOT ALONE IN YOUR MYOSITIS JOURNEY
See what our members, donors, and supporters say about MSU
As a myositis researcher, I support MSU’s mission and their excellent work !!!
I have only recently been diagnosed with Myositis. This organization has helped me more than I could have imagined. The information on the website is fantastic, the stories from people, etc, Before I found this group I was looking at my life as pretty much over, now I see hope and have learned many ways to help myself. GREAT ORGANIZATION
I just wanted to tell you how important your work has been for me. I have been struggling with DM. Your live chat with Dr Chung from Johns Hopkins has been a major factor in my muscle recovery and everyday well-being. Thank you!
This organization has become an important part of my life since I was diagnosed with a disease I never heard of, Dermatomyositis. My Johns Hopkins Rheumatologist told me about it.
I have spent many sleepless nights recognizing the commonality we have in such a diversified world of our disease. There are so many ways to live well and choices we have now due to this group. Keeping abreast is the only way for me to make sure I am headed down my path of life with positivism. Thank you, group!
This group has given me so many new friends who are going through the same symptoms that I have. We all can relate to each other on how we feel, whether it’s happiness, sadness, sick, or depressed. I look forward to logging on and talking with everyone
I am a terribly private person, who is not very good at expressing myself, so social media is not something I normally embrace. This page has been a lifeline during the darkest times in my life. When the doctors don’t listen, don’t know, or don’t care, this page has been an incredible source of information. When friends and family can’t possibly understand, this group of people has been an inspiring source of support. At the very least it is a blessing not to feel so alone.
This group is my go to place. I go here when I’m happy or when I’m sad. I go here to see how my friends are feeling and share in their hope, joy, pain and sorrow. I always find love and support in the light and in the darkness.
This group of wonderful people took me in when was lost and alone and unsure of where to turn with Myositis. They educated me, cared for me and my family. They inspired and supported me and gave me a place to turn in the dark days. They gave me a place to vent when I was down on myself and depressed. They gave me a place to come when I needed to share my accomplishments and cheered me on. There is no way I could repay them for all they have done to give me the spirit to go on. As far as I’m concerned they’re as much of my family as my wife and children. God Bless them all.
I love this group because no one can understand what we are going through except us. When we write negative things, someone out there can relate and it makes the reader know they are not alone. When we write positive things, it gives reader hope. The fact it is online 24/7 and we can connect from all over on our time, in the comfort of our home is priceless. No wasting energy to connect with others. You can sit in your bed and be part of a supportive group. I love this group and have healed a lot through others stories.
I may not have energy to post everyday but I love reading other’s posts and being a part of their journey. The site is positive when all that’s happening to us can be very negative.
There are times when I get up and just need a pick me up from life dealing with DM and this is the one place where I know I’ll find motivation. I don’t know what I’d do without all the wonderful people within this group. It’s hard for me to get my feelings and thoughts about what I deal with to my family and friends, though I know they care, they just don’t fully understand! I love this group so much for being a positive blessing in my life!
I have DM and this group has given me a place to turn when things get rough. Everyone on this site has a story to tell and they will share their experiences with all. We have cried and laughed together, shared pictures of our pets and families, and given a lot of encouragement to each other.
This group has helped me thru some dark days.. The people care not only about themselves but everyone else. They don’t judge you or shun you when you are having a bad day and just want to vent. Without this group I would still very alone and isolated in my disease. Jerry and [admins] are such wonderful leaders and a true inspiration to all.
This group has been a lifeline to me in the midst of so much uncertainty. I spent months muddling through with numerous doctors, stumbling toward a diagnosis. It’s only been in connecting with this group that I’ve felt a sense of hope. These are my mentors, the people who have walked the path before me and walk with me. I can receive and give encouragement and learn so much more than my doctors can tell me. With this group I have a place where I can complain, ask questions and be understood, and know that I am not alone.