MSU honors the memories of those whose lives were cut short by Myositis

MSU honors the memories of those whose lives were cut short by Myositis

One of the reasons that Myositis fails to receive a lot of attention and respect is that it isn’t considered a terminal disease and rarely, if ever, is indicated as the cause of death. However, conditions resulting from Myositis are typically listed as the cause of death: lung, heart, liver and kidney disease or failure to thrive due to inability to swallow, leading to choking, malnourishment, and aspiration pneumonia.

Medications taken for Myositis, such as high-doses and long-term use of corticosteroids and immunosuppressants, can also bring about a plethora of conditions which can lead to death, such as the inability to fight infections or to heal properly. However, the use of these medications if often required and doctors prescribe by weighing the benefits versus the risk.

Though Myositis Support and Understanding’s closed support groups, we have developed relationships with those who have passed away from Myositis-related conditions, and our hearts break each time another person succumbs to complications of this rare disease.

We believe the best way to honor them is to recommit to our mission of advocating, educating, and supporting everyone whose lives are impacted by Myositis with the hope that better knowledge and understanding will prevent lives being lost in the future.

For full understanding of the complications of both the disease and medications taken to control the symptoms, please visit the MSU website and select the Explore Myositis tab. The information provided is a valuable tool to pass along to the people you encounter (including health care professionals) to gain a better understanding of this little-known disease and its far-reaching complications.

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Myositis Support and Understanding Association (MSU) is a 501(c)(3) nonprofit organization with a mission to improve the day-to-day lives of Myositis patients. MSU is a patient-centered organization, founded by Myositis patients, for Myositis patients, and believes education, support, advocacy, and assistance are keys helping patients and caregivers. As a nonprofit, we rely on donations for funding and volunteers to help manage a fast growing organization.

View more information: Jerry Williams

© Myositis Support and Understanding Association, Inc. 2010-2017. All Rights Reserved. MSU is a 501(c)(3) nonprofit organization.

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Get your Zebra Shirts & Hoodies Today!

Campaign for Myositis Awareness Month, May 2017

Purchasing a shirt from this booster will help us, Myositis Support and Understanding, with our many patient support programs, education, financial assistance for patients and upcoming programs.

This year, 2017, Myositis Support and Understanding’s awareness month theme is “Sometimes Zebras have spots!” We want to raise awareness about how the experiences, symptoms, and complications of this rare disease are different, even among the patients with the same disease. Doctors are now trained, when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments.


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Hi, this may be interesting to you: MSU honors the memories of those whose lives were cut short by Myositis! The link is included below: --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.