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

Dermatomyositis Clinical Trial Recruiting through September 2017!

Dermatomyositis Clinical Trial Recruiting through September 2017!

The opportunity to enroll in PIONEER, a clinical trial investigating a new therapy for adults with dermatomyositis, is closing on September 8, 2017!

Trials such as PIONEER are critical to the advancement of new potential therapies such as IMO-8400 in rare conditions like DM. As patients with DM are well aware, new therapeutic options in this condition are scarce and patient engagement in these endeavors is crucial to continue to foster new drug development.

If you or someone you know may be eligible please contact Idera patient advocacy at, patientinfo@iderapharma.com or 1-877-888-6550 ext. 2 (U.S. toll free) or 617-679-5500

To learn more, please go to ideraclinicaltrials.com/dermatomyositis.

Celebrate your Caregiver and share with us

Myositis Support and Understanding Association Turns Two and wishes for Myositis patients to Celebrate their Caregivers

Myositis Support and Understanding Association Turns Two and wishes for Myositis patients to Celebrate their CaregiversIn recognition of everything Myositis Caregivers provide, MSU is asking patients to “Celebrate their Caregivers” and share the experience through videos, photographs, and articles to be distributed on the Myositis Support and Understanding website and social networking sites.

“Myositis is an opportunity for us to be aware and intentional every day with our loved ones, a constant reminder to reflect and be grateful for the abilities we have and the people we love.” Rick Boling, a family member of a myositis patient and co-caregiver with the rest of the family.

Due to the nature of the Idiopathic Inflammatory Myopathies, patients often experience debilitating muscle weakness, fatigue, chronic pain, uncomfortable to painful skin rashes, trouble swallowing, lung disease, as well as other organ involvement. In some cases, especially with Inclusion Body Myositis (IBM) and refractory cases or advanced forms of polymyositisdermatomyositis, or necrotizing autoimmune myopathy, full disability can occur in which patients require full assistance with activities of daily living, known as ADL’s. When patients progress to this level of disability caregivers become a necessity for patients to function . . .

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

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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PIONEER, Idera clinical trial for dermatomyositis

PIONEER, Idera clinical trial for dermatomyositis

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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.