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

With Myositis, sometimes Zebras have spots

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.

What is Myositis?

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.

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

See what our members, donors, and supporters say about MSU
View all testimonials

CONTACT US

We are not available at the moment however you can leave us a message and we will get back with you as soon as possible. If you do not receive a response within a day be sure to check your spam/junk folders.

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With Myositis Sometimes Zebras Have Spots on Crowdrise

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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.