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Myositis Support and Understanding Association
94 followers -
Patient-Centered Myositis Nonprofit
Patient-Centered Myositis Nonprofit

94 followers
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No doubt it's cold in a lot of places in the U.S. Those with Raynaud’s phenomenon, one of many #myositis overlaps/complications, here are some tips to help control your symptoms. http://ow.ly/m8Oy30hFxvG #Raynauds #coldweather
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Patients w/ inflammatory #myositis have high prevalence of asymptomatic vertebral fractures. (yrs of corticosteroid intake & other factors had no correlation w/ # of fractures) http://ow.ly/vQ2Z30hFuW5 #inflammatorymyopathy
What is your experience with vertebral fractures?
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We love hearing your feedback! Mr. Thompson said, "This organization has become an important part of my life since I was diagnosed with a disease I never heard of, #Dermatomyositis. My Johns Hopkins Rheumatologist told me about it." #myositis #raredisease #inflammatorymyopathy
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The Impact of Pollution of the Skin

We don’t know the cause of #myositis, but environmental factors are likely involved. Read this article about air pollution and your skin. Dr. Doris Day, #dermatologist, offers great tips.

Be sure to consult with your doctor before starting supplements, changing/altering treatments.

What other skin care tips would you provide from personal experience?

#skincare #pollution #autoimmunedisease #skindisease http://ow.ly/bwIm30hySuA #inflammatorymyopathy #dermatomyositis
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Follow us on Facebook! #Myositis community news, clinical trials & updates, upcoming events such as Rare Disease Day, as well as online video support, education, and activity sessions. Connect with other #myositis patients and #caregivers on our page, too! Facebook.com/UnderstandingMyositis
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Falls are an early symptom of #myositis and a continuing risk. Other factors add risk like medications, home safety, vision, other illnesses. #Caregivers, have an open, honest conversation with your loved one about fall prevention to minimize risk of serious injury and to help you worry less. http://ow.ly/60dj30hyggu
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A Bright Future for Myositis, MSU - Jerry shares just some of the MSU goals for 2018.

Also discusses Rare Disease Week, Smartphone App for Myositis, New Online Video Support, Education, and Activity Sessions, increased awareness and education. Taking Action and Passion, Dedication, and Hope.

Take a minute and read the full article: https://understandingmyositis.org/2018-future/

Only 1 Day left to make a donation to MSU to ensure we are prepared financially to meet our lofty goals and help improve the lives of myositis patients.

#myositis #polymyositis #dermatomyositis #sIBM #inclusionbodymyositis #necrotizingmyopathy #necrotizingautoimmunemyopathy #inflammatorymyopathy #raredisease #pain #fatigue #health #autoimmunedisease #chronicdisease #jdm
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Why does Jerry Williams, MSU Founder/President and #polymyositis patient, give to MSU? Read what he said and and donate today at UnderstandingMyositis.org #myositis #inclusionbodymyositis #giving4myositis #raredisease #nonprofit #muscledisease

“As a patient who was once lost in what felt like a never-ending battle for a diagnosis, without support or easy-to-understand information, I am thankful MSU has been able to fill the gaps in these areas while creating additional patient-centered programs. We are just getting started. As MSU utilizes newer technologies and forms more research partnerships we will be a part of finding solutions to our communities needs.
As president of MSU, I am proud to donate the little I can afford financially knowing firsthand that my small contribution directly impacts patients in positive, life-changing ways. My hope is you will join me in giving what you are able so we can continue to build upon our goals and actively participate in the global conversation surrounding myositis. Making a financial investment in the future of MSU will help provide a future for myositis patients. “

There are still a fews day left to help make a difference in the lives of patients across the United States and the World. We appreciate any amount you are able to donate. If you have already donated, we appreciate your support. See all ways you can donate at UnderstandingMyositis.org/giving
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IBM Patients: Tomorrow is the IBM Patient Video Support Session; starts at 4PM EST. Meet and talk with others, ask questions, share experiences. #inclusionbodymyositis #sIBM View details and see how to join at http://ow.ly/2mUp30httrO #myositis
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"Currently, medical debt is the No.1 cause of personal bankruptcy in the U.S."

Read this article from IG Living, "A Matter of Life or Debt"

Living with any chronic illness like Myositis can cause severe financial hardships. Whether it's medical bills, cost of medications, travel to see a physician knowledgeable diagnosing and treating inflammatory myopathies, or keeping up on your rent and mortgage or keeping the utilities on.

This is one reason we are so passionate and committed to continuing to provide our need-based financial assistance program for myositis patients.

http://ow.ly/id5p30hmScy #myositis #inflammatorymyopathy #medicaldebt #chronicillness #raredisease
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