Myositis Awareness Month 2019
Theme: #MyositisLIFE, Myositis Warrior
New Patient and Caregiver Experience Website
Knowing how important and empowering it is for patients and caregivers to be able to share their experiences publicly we launched our brand new #MyositisLIFE website at MyositisLife.org.
Myositis is a variable disease. Each patient, even those with the same type of myositis, experience things differently. Symptoms may be different, response to or availability of treatment may be different, discovering adaptations to remain mobile may be different, you get the point.
We encourage every myositis patient and caregiver/care partner to consider sharing their topic-based experiences through words, photos, short videos, and memes. We will help anyone interested in writing if needed. The important thing is to get the story told effectively.
Myositis Awareness 2019 Educational Videos
During Myositis Awareness Month, May 2019, we went back to our roots with a theme and focus on #MyositisLIFE as a Myositis Warrior.
Myositis affects every aspect of a patient and caregiver’s life. One important tool to better empower both is education.
The sessions included: Exercise as a treatment for myositis, Ig Therapy, dermatomyositis skin treatments and autoantibodies, and the Plasma Services Group (PSG) plasma donation for myositis patients for research. The recorded sessions are included below.
Exercise as a treatment for myositis
This session by Helene Alexanderson, Ph.D. covered the safety and effects of exercise in recent onset and established adult and juvenile IIM and includes a home exercise plan for those with polymyositis, dermatomyositis, and inclusion body myositis.
IG Therapy
James Sheets, PharmD, CEO of CSI Pharmacy and Michelle Vogel, MPA, VP of Patient Advocacy & Provider Relations with CSI Pharmacy joined us to discuss IG therapy (IVIG and SCIG). Also discusses insurance approval. Must watch session for those considering or already on Ig therapy.
PSG+MSU+You: Your Role in the World of Diagnostics
Nichelle Porto, Mike Delahanty, Kathryn Kohl, and Kate Boylan of Plasma Services Group (PSG) joined us for a live video discussion about donating plasma for medical research. You could earn up to $200 per donation of plasma. This is not whole blood donation and the plasma is used for medical research and in the making of diagnostic test kits.
Skin findings seen with myositis autoantibodies and treatment of skin in dermatomyositis
Dr. Victoria Werth, internist and dermatologist, join us again to discuss antibodies associated with dermatomyositis (DM) and clinically amyopathic dermatomyositis (CADM), as well as information regarding treatments for the skin symptoms and some sun protection tips.
First Annual Myositis Empower Walk
The Myositis Empower Walk and Myositis EmpoweRun 5K were created in loving memory of Robert “Bob” Landman by his family to help Myositis Support and Understanding continue with its important patient-centered work.
The first Myositis Empower Walk hosted by the Landman family was held on May 19, 2019, in Henderson, Nevada, just outside of Las Vegas. MSU VP Lynn Wilson was able to attend and share the work we are doing with the supporters in attendance.
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Browse myositis educational videos
Learning about the idiopathic inflammatory myopathies, referred to as myositis, is important. We make it easy to get the education you deserve by hosting live online video education and support sessions. Click the button below to begin browsing the recorded sessions we host. And, check out upcoming events.
