June is Myasthenia Gravis Awareness Month: Spreading Rare Disease Awareness

The month of June is here and every year it is recognized as Myasthenia Gravis (MG) Awareness Month. This is a time meant to help spread awareness about myasthenia gravis among the general population and in the medical community. This year, the Myasthenia Gravis Foundation of America (MGFA) is switching gears and calling their activities MG Action Month – Turning Awareness Into Action. The MGFA has plenty of ways for the community to make their voices heard this month.

About Myasthenia Gravis

Myasthenia gravis is a long-term autoimmune disease that is most characterized by weakness of the skeletal muscles which can affect a patient’s ability to move and breathe. As an autoimmune disease, myasthenia gravis is ultimately the result of abnormal immune system behavior in which the system attacks normal body tissue. In this disease, the immune system produces antibodies that inhibit regular neuromuscular function. Symptoms of the illness include muscle weakness that worsens after activity and gets better after resting. This weakness may affect the face, eyes, neck, breathing, and limbs. It may cause speech and swallowing difficulties, eyelid drooping, shortness of breath, and blurred vision. In severe cases, patients may require breathing assistance with a ventilator. Treatment options for myasthenia gravis include immunosuppressive medications, thymus gland removal, IVIG, and plasmapharesis. Most patients can effectively manage the condition with treatment. To learn more about myasthenia gravis, click here.

How to Get Involved

There will be several events this month that the MG community is encouraged to get involved with, such as an online yoga seminar on June 8th, an online painting class on the 22nd, and the first-ever support group meeting for MGFA caregivers, which will be held on the 12th. You also won’t want to miss the MGFA Southeast Regional Online Conference, which is taking place on June 26th. Click here to get signed up for it.

The MGFA also has some helpful awareness resources available. Check out this “How To” awareness PowerPoint presentation that can help you get some ideas on how to spread awareness. The organization has also created a toolkit for info on how to educate people about myasthenia gravis and engage with the media. Check it out here.

Other actions you can take for MG Action Month include:

  1. Seeking a proclamation statement from elected officials. Learn more here.
  2. Contacting your representatives about the STAT Act, which has the potential to benefit the rare disease community. Learn more here.
  3. Teal is the color of MG awareness. Take photos of yourself wearing it or reach out to local real estate management to arrange a light display.
  4. Cookbook Challenge: Email your favorite recipe to [email protected] for a chance for it to be included in the MGFA MG Cookbook, to be released next holiday season.
  5. T-Shirt Design Challenge: Email your own creative t-shirt design focused on the theme Turning MG Awareness Into Action. The winning design will be used to create t-shirts for MG Action Month.

These are just some of the ways that you can play your part during MG Action Month. For more information, click here.

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