May is Myositis Awareness Month: Spreading Rare Disease Awareness

The month of May is recognized as Myositis Awareness Month, a time to play your part in spreading awareness about myositis among the general public and in the medical community. The Myositis Association has many ways that you can get involved in this event. This year’s theme for the awareness month is “A Call to Action.” 

Keep reading to learn more about you can become involved.

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 disease 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 myositis. 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.

There are several different ways for the community to help inform the public during Myositis Awareness Month:

  1. Tell your story. Are you a patient? Then now is the time to talk about your experiences with the people in your life. Check out these patient stories to get inspiration.
  2. Give back. Do you support the activities of The Myositis Association (TMA)? Now is a great time to donate. Click here if you’re interested.
  3. Use your social media. Talk about the disease on your social media accounts. Don’t forget to use the hashtags #TMA #Myositis #TheMyositisAssociation on your posts. Don’t forget to follow TMA on Instagram, Twitter, and Facebook.
  4. Talk to physicians in your area. Awareness about this illness, which often is tough to diagnose, is lacking even among medical professionals. This handy guide (found here) will help them learn about the disease. There is also another infographic (found here) that can also help dermatologists identify characteristic rashes on people of color.

There are events happening every day in May for Myositis Awareness Month. One you may not want to miss is the TMA Virtual Summit, which is taking place on May 22. Click here to learn more about it. For a full list of events, click here.

There are so many ways to help out the myositis community this month, so what are you waiting for?

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