Caring for Someone with Myositis

Knowledge is power

Do you care for someone with Myositis? A spouse, parent, child or friend? Myositis is a lifelong battle full of ups and downs; often with stretches of good health which can be cut short by flare-ups (also known as “flares”) of the disease. The uncertainty of the disease can affect your life just as much as it does the life of the person with the disease. Learning all that you can about Myositis is beneficial to both you and the patient.


Information is a powerful tool. It can help you understand the symptoms, restrictions and needs of a patient and help you communicate better with doctors. Learn as much as you can from trustworthy sources. While the internet is a great tool, always check your sources to make sure the information is accurate and up-to-date. Here are some ways to improve your knowledge:



Both TMA and MDA offer in-person support groups where both the patient and caregiver is welcomed:


How has knowledge of the disease helped you as a caregiver?

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