Dedicated to improving the lives of Myositis patients
Myositis is a rare, chronic, often disabling, autoimmune muscle disease without a cure
Learn more about Myositis and how MSU is helping patients and caregivers
With Myositis, sometimes Zebras have spots
The 2017 MSU Myositis Awareness Month Theme, and ongoing 2017 theme is “With Myositis, Sometimes Zebras have spots!” We want to raise awareness about how the experiences, symptoms, and complications of this rare disease are different, even among the patients with the same disease.
The Zebra is the recognized symbol for rare diseases. This campaign features a Zebra with spots. The spots indicate unique aspects of how patients and caregivers experience myositis in many different ways including complications, hardships, how it affects everyone surrounding the patient, the creativity of patients in planning and building their own assistive devices, etc.
Doctors are now being trained when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments.
Through our public education and support of our members, plus our financial assistance program, MSU helps patients deal with the rare “spots of the zebra” called Myositis. Throughout 2017 we hope that you will take action by making a donation, creating your own MSU fundraiser through crowdfunding campaigns, share our graphics, website pages, and other resources we provide, and talking to your health care team about who MSU is and how they can help.
What is Myositis?
Rare, Systemic Autoimmune muscle and skin diseases
Myositis is a term that literally means inflammation of the muscles. The focus of MSU 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. Myositis, in any form, is a disease without a cure.
Here is a quick primer on myositis types. View full information by clicking the links. 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 asymmetric and may be prominent in the smaller muscles of the forearms and calves. Necrotizing Autoimmune Myopathy and the Juvenile forms of Dermatomyositis and even more rare, Juvenile Polymyositis, are forms of Inflammatory Myopathies.
As more research is being done, we are finding that some forms of the current types of myositis actually may be subtypes themselves. At MSU, we help to educate and provide you with the latest information about myositis along with other programs designed to help patients, care partners, family members, friends, the general public, and the healthcare community.
Myositis resources and ways to get involved
Below are some helpful MSU Myositis resources we have featured to help you easily find our programs, support options, education, and ways to get involved.
Our site is loaded with helpful and educational information. Use the search tool and navigation at the top to find more information about myositis, its complications, overlaps, and learn more about who we are, and get active in using our Myositis Network.
See what our myositis members, donors, and supporters are saying about MSU
Click here to view more testimonials
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I am so filled with joy and gratefulness! Not just for the help but how the help has been given with so much support, timeliness, and understanding! I can’t express how much this will help me to become stable in my home! God Bless you all!
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As a myositis researcher, I support MSU’s mission and their excellent work !!!
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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
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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!
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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.
