Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)
Video with Helene Alexanderson, Ph.D. talks about the experience of pain and fatigue in adult polymyositis and dermatomyositis based on results from qualitative studies, and how to adapt physical activity and exercise in relation to pain and fatigue.
Learn more about the different types of the idiopathic inflammatory myopathies (IIM), generally referred to as myositis, rare systemic autoimmune muscle diseases.
Learn more about patient-centered programs we offer including support, education, financial assistance, clinical trial matching, advocacy and access to research.
Learn about the various free support options we provide, including live video support sessions and online groups, and get the patient and caregiver support you deserve.
Check out educational myositis videos. Both patient- and -expert led sessions will help you better understand your rare disease and learn more about opportunies for patients.
You can make a difference in various ways. Learn more about how you can get involved in helping MSU and promoting awareness and education of myositis today.
Inclusion body myositis
Although we serve all patients and caregiers with myositis, inclusion body myositis is different from the other inflammatory myopathies.
sIBM patients, here are just some opportunies:
Upcoming Video Support Sessions
Mark your calendar to join for the following sessions. Registration is not available for video support sessions. Join on the date and time listed. View the individual events for full details and join links.
Myositis Patient Video Support Session, September 21, 2019
September 21 @ 2:00 pm - 3:30 pm EDTsIBM Patient Video Support Session, September 2019
September 27 @ 5:00 pm - 6:30 pm EDTMyositis Patient Video Support Session, October 2, 2019
October 2 @ 7:00 pm - 8:30 pm EDTMyositis Patient Video Support Session, October 19th, 2019
October 19 @ 2:00 pm - 3:30 pm EDTsIBM Patient Video Support Session, October 2019
October 25 @ 5:00 pm - 6:30 pm EDT
Share your #MyositisLIFE experiences
We need to hear your voices! Share your experiences with myositis on our new patient and caregiver website, #MyositisLIFE. Share your topic-based experience as a story, photo, short video, or meme.
Emily A. Filmore shares “My Vampire Life” her story of life in the dark because of photosensitivy to sunlight and indoor lights. Read the full article here.
Myositis Caregivers
We love and appreciate our myositis caregivers and care partners.
We have put together tips and resources we believe will help you as a member of your loved one’s healthcare team.
Myositis News and Updates
We are excited to announce our partnership with Ra Pharma for RA101495-02.202: A Phase 2 Study of Zilucoplan in Patients with Immune-Mediated Necrotizing Myopathy. Find out our more and how you can participate.
Watch the video, “Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)” with Helene Alexanderson, Ph.D. with information about how to adapt physical activity and exercise in relation to pain and fatigue.
In this video, Patrick Schmidt of FFF Enterprises and Michelle Vogel of CSI Pharmacy join MSU to explain the IG shortage. More importantly, if you are a patient affected by the shortage, this video provides the information you need to self-advocate and get your IG therapy.
Myositis Support and Understanding (MSU) partners with the University of Pittsburgh for a new NIH-sponsored study entitled, “Myositis Patient Centered Tele-Research (My-PACER)”
Financial Assistance Program
We know firsthand myositis affects every aspect of a persons life.
We are here to help.
Clinical Trial Matching
We have partnered with Antidote Technologies to make clinical trial matching faster, more refined through the search tool, and by providing you will all of the information you need to make a decision to participate in a clinical trial. And, the trial information is easy to read, adding a huge benefit.
