Join the Myositis Support Community
The MSU online support groups started in 2010 and are the founding basis of our nonprofit.
We take patient and caregiver support seriously. We operate our main community, Myositis Support Community, in partnership with Inspire, as well as three closed Facebook support groups designed to help Myositis patients, caregivers and care partners, family members, and friends.
Our support groups offer the needed emotional support as well as much-needed education. We are also empowering our members to self-advocate!
Many myositis patients will never meet another patient due to the rarity of the disease and because patients are spread out across the globe. With our global support groups, patients have the ability to meet and form lasting relationships with others going through the same challenges. Our Facebook groups are closed groups as we value your privacy.
MSU Video Support
Extending our online support platform to include Video Support just makes sense. Some may never meet another Myositis patient in person as we are spread around the globe due to the rarity of our disease. Having the ability to talk face-to-face in a video support session will offer a more personalized experience and help to continue building relationships. Our video sessions will feature many different topics including:
General Support Sessions – A “get-to-know each other” session; usually open discussion. At times, we will choose a topic of interest to the community.
Topic Related – A topic is selected to discuss during the video support session such as ILD, coping with Prednisone, chronic pain, Myositis antibodies, purchasing a wheelchair or powerchair, etc.
Learn something new – These video support sessions focus on teaching others how to do something specific like paint, crochet, scrapbook, journal, and many other ideas. This will give people an opportunity to pick up a hobby that they are able to do despite living with a debilitating disease.
Q&A Sessions/Webinars – Video support and webinars focused around specific topics and Q&A’s to offer you a chance to learn more about Myositis, treatments, complications, MSU, as well as from presenters.
Video Support & Education led by Medical Professionals: These are often topic-related to give patients, caregivers, and others a chance to learn, discuss, and ask questions. A recent example is Dr. Weihl’s video session about sporadic inclusion body myositis.
We want our members involved in our organization. We were founded by Myositis patients, for Myositis patients and caregivers. Remember, we value you and want you to learn as much as possible to live your best possible life despite myositis.
We provide three closed Facebook groups for myositis. Myositis Support, Myositis Caregivers, Family Members and Friends, and Inclusion Body Myositis Support and Understanding.
If you request to join a Facebook group, you must answer prequalifing questions.