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
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, firstname.lastname@example.org or 1-877-888-6550 ext. 2 (U.S. toll free) or 617-679-5500
To learn more, please go to ideraclinicaltrials.com/dermatomyositis.
Myositis Support and Understanding Association Turns Two and wishes for Myositis patients to Celebrate their Caregivers
In 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 polymyositis, dermatomyositis, 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
See what our myositis members, donors, and supporters are saying 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