May is Myositis Awareness Month: Spreading Rare Disease Awareness

The month of May is recognized as National Myositis Awareness Month, a time to spread awareness about myositis among the general public and the medical field. Organized by The Myositis Association, this year’s theme for the month is “Encouraged, Engaged, & Empowered.”

This organization has put together an impressive roster of events as well as resources that patients can use to help share their story.

About Myositis

Myositis, strictly defined, means a condition of swelling and inflammation affecting muscle. There are a variety of causes, such as infections and injuries. It is also a documented side effect of lipid-lowering therapies such as statins. However, when the condition appears on its own, it is typically the result of an autoimmune disorder, in which the body’s immune system mistakenly attacks healthy tissue. There are many different forms of the disease. Symptoms vary depending on the type and which muscles are affected, but can include muscle weakness, swelling, muscle pain, rash, thickened skin on the hands, problems with breathing, problems with swallowing, and falls. Treatment can vary depending on the cause; myositis caused by drugs can be addressed by halting the treatment, and myositis from infections can resolve by treating the underlying infection. When it is the result of an autoimmune disorder, immunosuppressants such as prednisone, methotrexate, and azathioprine may be used. To learn more about myositis, click here.

How to Get Involved

  1. Tell your story. If this condition is a part of your life, now is the time to share about it with your social circles, be it family, friends, or coworkers. Check out these stories from patients for inspiration.
  2. Give back. Support the Myositis Association community with a donation. Click here to get started.
  3. Sharing on social media. Talk about the disease on all of your social media platforms and share other posts from the patient community. Don’t forget to use the hashtags #myositis, #TMA, and #themyositisassociation.
  4. Work with your physician. Spread information about the illness to the healthcare providers in your local community. Resources such as this Physician’s Guide to Myositis and the Pantone Project are critical for caregivers and doctors.
  5. Check out this Awareness Month Guide for more tips and ideas.

For more information and a full calendar of events for the month, click here.

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