Myositis Awareness Month ends, but the work continues!
Myositis Awareness Month is over, but the hard work we are doing continues! We are picking right back up where we were prior to May, sharing ways that you can Take Action.
Awareness month provides you with a lot of great content you can share on social media and email. In addition to sharing to help others better understand, as patients there are a lot of other empowering opportunities. Learn more about these, including some compensated opportunities, on our Take Action page. We are adding more soon!
And, prepare for our biggest event yet, the 3rd Annual Myositis Empower Walk, virtual and in person!
Living with myositis is hard enough. We are here to help with our Myositis Patient Financial Assitance Program. We cover certain emergency household expenses, medical bills, and mobility and assistive devices. Program is available to U.S. residents. See full details available in our help guide.
Plasma donations are down 40% since the lockdown, and without an increase in plasma donors there could be a shortage of IG (IVIG, SCIG) used to treat myositis and many other diseases. Learn more, find a plasma donation center, and invite your family and friends to donate and join the #ItsMyTurn campaign.
Watch recordings of our expert-led myositis educational videos to learn more about the various types of myositis and other myositis-related topics and patient opportunities. New videos just added!
We have put together a list of trusted resources for COVID-19 including an update to our plans at MSU to pause business as usual and focus mostly on supporting our fellow patients and caregivers in this difficult time.
Myositis News and Updates
Larry M. is living with inclusion body myositis (IBM) and he joined us to share adaptations he has made and products he uses for better accessibility, and quality of life. He shows us how he “Inspector Gadgets” his way through myositis. If you are interested in how he “MacGyver’s” adaptations for things such as easier-to-use pens for hand weakness with fishing bobbers, you are in for a treat!
David Overby, a Physical Therapist with his own practice, joins us to talk about Hands On Physical Therapy for myositis patients, such as myofascial release. He talks about chronic pain versus complicated pain and techniques he uses.
Upcoming Myositis Video Events
Monthly Saturday Afternoon Myositis Patient Video Support
June 19 @ 3:00 pm - 4:30 pm EDTRARE. Talk with MSU: Self-Advocate or Hypochondriac
June 21 @ 7:00 pm - 8:00 pm EDTIBM Patient Video Support session
June 25 @ 5:00 pm - 6:30 pm EDTMonthly Necrotizing Myopathy Patient Video Support session
June 26 @ 3:00 pm - 4:30 pm EDTDM, PM and Antisynthetase Syndrome Patient Video Support
June 30 @ 7:00 pm - 8:30 pm EDTMonthly Wednesday Evening Myositis Patient Video Support
July 7 @ 7:00 pm - 8:30 pm EDT
Have you ever grieved your losses due to chronic illness? Have you grieved over how your life has changed as a caregiver?
Award-winning artist, Aoede, Lisa Sniderman, has been living with dermatomyositis for over 12 years. She recognized that she forgot to grieve her own illness and realized that through music, she could reach many others who may have also forgotten to grieve.
“The Grieving Project is a road map to our hearts, an invitation for you to grieve your loss, your change, your unexpected and unwanted transformation, and the inspiration and encouragement you need to awaken, express, rejuvenate, activate, connect, shine and truly thrive!”
Are you living with myositis?
There are many empowering opportunities for myositis patients. Get involved, advocate and educate, and be a part of traditional and unique patient-focused medical research, and more!
Myositis patients, here are some opportunities:
Like and Follow Myositis Support and Understanding (MSU)
on our social networks to engage with the myositis community.
