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.



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 key to helping patients and caregivers. As a nonprofit, we rely on donations for funding and volunteers to help manage our fast growing organization.

View more information: Myositis Support


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