Join a Support Group for Myositis

Online support groups for Myositis patients, caregivers, family members and friends

The diagnosis: “You have ____myositis.” “What do we do to cure it?” The doctor responds “It is very rare, there are treatments, but there is no cure.”

Now the reality sets in. I am chronically ill with a rare muscle disease for which there is no cure, and there is not a lot of research going into treatments. There are very few Myositis specialists, so a lot of the responsibility for our healing falls on our own shoulders along with a doctor to write prescriptions.

I find support groups so helpful because of the suggestions from people who suffer from the same disease. One example is when I could not swallow, and another myositisee suggested that I tilt my head forward, and that was a tremendous help. Support groups are a very important instrument in coping with your ailment, you not only glean the knowledge but are also encouraged, and you can share success stories and encourage others.

In conclusion, you are not alone, and you will not feel alone when you join a support group because of the knowledge, compassion, understanding, bonding, and unity found in them.

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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: Join a Support Group for Myositis! The link is included below: --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.