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

MSU Awareness Theme

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.

Our Programs and Services

Check out the myositis programs and services we offer our members such as financial assistance, letter writing review, advocacy, get well program, and online support programs.

View Programs and Services

Get Support that makes sense

We bring the support right into your home. When living with this often-debilitating disease, it’s tough to get out sometimes. Join our FB groups, video chat sessions, and our onsite Myositis Network.

See support options

Get Invovled

We are all in this together! So, why not get involved today. We offer many opportunities such as volunteering, be an admin for our support groups, join our board and more.

Find ways you can help

Myositis Events

We offer free myositis and related events. Whether they are patient specific video chat support sessions or educational sessions, they are always free and easy to use. Check out upcoming events today.

See Myositis Events

Shop the MSU Store

Are you looking for MSU myositis branded materials to show your support and to help raise awareness of the rare disease myositis? We have products just for you including wristbands, educational materials, apparel, pens, and more. Start shopping today!

Shop MSU Gear

Shop MSU on Cafepress

We have expanded our shopping options to provide you with many different ways to show your support. From Shirts and tote bags, to mugs, drinkware, and other fun stuff, shop the MSU Cafepress store today. New, updated designs coming soon!

Shop MSU on Cafepress

See what our myositis members, donors, and supporters are saying about MSU
Click here to view more testimonials

Myositis Support and Understanding // Knowledge in Action

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© Myositis Support and Understanding Association, Inc. 2010-2017. All Rights Reserved. MSU is a 501(c)(3) nonprofit organization.

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Hi, this may be interesting to you: Myositis Support and Understanding! The link is included below: https://understandingmyositis.org/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.