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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 patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

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© 2020 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

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