Myositis Support and Understanding

MSU is a growing 501(c)3 nonprofit organization founded by patients, for patient living with the rare disease Myositis. We offer many helpful programs for support, education, advocacy, access to research, and financial assistance. 

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My Life as a Vampire - #MyositisLIFE

Emily shares how she is living the vampire life to improve her dermatomyositis skin symptoms. Dermatomyositis is a photosensitive disease and the sun can cause disease flares.

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Myositis Support and Understanding Association Supports Rare Disease Day® and Joins Global Movement to Raise Important Awareness for Rare Diseases

Lincoln, DE—February 20, 2018—Myositis Support and Understanding Association (MSU) has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

As part of the MSU patient-centered focus and commitment to educating and supporting those with myositis, a rare disease, MSU is hosting two live online video education sessions on Rare Disease Day, February 28, 2018, as well as a month-long celebration with patient support and activity sessions. The focus for MSU is the idiopathic inflammatory myopathies, which includes dermatomyositis, polymyositis, juvenile dermato- and poly- myositis, inclusion body myositis, and necrotizing autoimmune myopathy.

Dr. Victoria Werth, MD, will join MSU for a live, online video education session titled “Overview and new developments in dermatomyositis” at 2PM EST on Rare Disease Day. Register here.

Also, Nurse Vicky Starr, RN, IgCN, will join MSU for a live, online video education session at 6PM EST on Rare Disease Day, titled “IV and SubQ IG Therapy for Myositis.” Register here.

  See ful release

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List your Myositis Doctors

In an effort to create a better listing of physicians who diagnose and treat #myositis, we are asking you to use our web form to enter as many details as possible about the physician's you see for your myositis. This will be helpful for patients looking for a new doctor and for new patients looking for their first.

There is also a rating when you list the doctor. Please rate them seriously according to how you feel they understand and treat you and myositis.

We appreicate your support in this endeavor. 

https://UnderstandingMyositis.org/list-doctors

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In celebration of our Myositis Caregivers, Family Members and Friends, and in support of National Family Caregivers Month, we invite you to join us for a free, live, online Video Support Session to talk about caregiving with other Myositis caregivers. Ask questions, share your experiences, or just listen and watch.

Register today for this free session and you will be sent all details via email. Don’t forget to add to your calendar as well!

Please, no patients. Only caregivers, family members and friends of myositis patients. 

When: Tuesday, November 28, 2017, 6:30 PM Eastern Time

Where: Online using any device

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UNC-Chapel Hill and NC State scientists reveal how a small modification in cells causes the TDP-43 protein to clump – a hallmark of ALS and sporadic inclusion body myositis.

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Open Enrollment for the Health Insurance Marketplace begins in 2 days, Nov. 1st. 

Don't miss your opportunity to enroll or renew your Health Insurance through the Marketplace. Window-shop plans today to be ready. 

Shortened enrollment period this year - Nov 1st - Dec. 15th for most states. See full article for additional details and some helpful information. 

Remember, these plans are required to cover pre-existing conditions, such as #InflammatoryMyopathies #Myositis and are required to cover essential health benefits. Plans carry no annual or lifetime limits.

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Very exciting news for those with #Dermatomyositis! Stay tuned for more information!

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What Caregivers Need to Know About FMLA: An Article by Deb Hipp Originally Posted on Senior Living Blog

If you’re a caregiver for an aging loved one, you’ll probably need to miss work at some point to help with medical treatment or unexpected emergencies. In fact, the likelihood is so great that ther…

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Mark your calendar and join us Wednesday, October 11th at 12pm Eastern (11am Central, 10am Mountain, 9am Pacific) for Laughter Yoga! No registration required and the video session is free. At the time of the event, visit this page and click on the join button! (If this is your first MSU video session, join a few minutes early to ensure you have time to get everything set up! This is really beneficial and a ton of fun!

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Thursday, September 21st at 12PM EDT

ILD and Myositis with Fiona

Fiona, living with Dermatomyositis for three years and ILD for two years, has realized the importance of being proactive about her lung issues. Some of the things she does are based on research, others are based on her personal experience. She is not a doctor but is delighted to share how she deals with it on an everyday basis.

Join in this video chat session to hear Fiona’s experiences, ask questions, and share what works for you! Fiona led a video chat in August, “Myositis and Food with Fiona,” that was excellent! You don’t want to miss this one.

Meet other patients Face-to-Face and share experiences in this non-medical conversation with other people living with myositis! Make new friends who understand! You don’t have to feel alone!

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Case study of a 56 year-old man that presents like most with Inclusion Body Myositis, with weakness and frequent falls. Includes imaging studies and an overview of sIBM.

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Mental Health & Myositis Awareness Month’s meet, Jerry shares his story

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Antisynthetase Syndrome

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EDUCATE #4: WHAT IS NECROTIZING AUTOIMMUNE MYOPATHY? Below is a graphic you can share on your social networks. And, learn more at Understandingmyositis.org

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With #Myositis, sometimes Zebras have spots. #Raredisease with no cure. Educate, donate, & share our resources http://thndr.me/ySAke9

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Purchase your Myositis Awareness Shirts and Hoodies