May is Myositis Awareness Month!
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
The 2017 MSU Myositis Awareness Month 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 creating 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. This is also our largest fundraising month and we hope that you will make a donation, create your own MSU fundraiser through crowdfunding campaigns, and share our graphics, website pages, and other resources we provide during May 2017.
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 is a disease without a cure.
Here is a quick primer on the common of the rare disease, myositis, types. 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.
As more and 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 member, friends, the general public, and the healthcare community.
Myositis resources and ways to get involved
Below are some interesting Myositis resources we have featured to help you find our programs, support, education, and involvement you may be interested in.
Our site is filled with helpful, educational information. We hope you will use the search tool and the navigation at the top to search our site to learn more about myositis, its complications and overlaps, learn more about what MSU does and will do, and take part in our Myositis Network.
See what our members, donors, and supporters say about MSU
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!
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.