June is Myasthenia Gravis Awareness Month: Spreading Rare Disease Awareness

June is recognized as Myasthenia Gravis Awareness Month. Primarily organized by the Myasthenia Gravis Foundation of America (MGFA), this event is focused on spreading awareness as well as boosting efforts towards myasthenia gravis advocacy, fundraising, and research. In light of the ongoing coronavirus/COVID-19 global pandemic, most of the events and activities for this year’s event will be conducted virtually.

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.

 

This year, the foundation is encouraging participants to take photos of their activities related to Myasthenia Gravis Awareness Month and submitting them to their website so that they can be added to their #MGStrong map. You can add your photos to the map here.

Here are some examples of how you can participate:

  1. Create a mural. Use sidewalk chalk to make an awareness mural or artwork in your neighborhood.
  2. Organize a virtual hangout. Schedule a virtual meeting or happy hour with friends or family to talk about myasthenia gravis facts and spread knowledge. You could even stream your event live on Facebook.
  3. Start a fundraiser. Hold a fundraiser on Facebook for the MGFA and ask some family and friends to pitch in.
  4. Organize a car parade. This is a great way to spread awareness while maintaining physical distancing. Teal is the color of the awareness month, so decorate cars with teal decorations.
  5. Reach out to media. Get in touch with reporters in your area to talk about myasthenia gravis and spread awareness in your local community.
  6. Use the hashtags #myastheniagravis and #IhaveheardofMG on social media.

Download the myasthenia gravis awareness toolkit here to help you get started.


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