Cue the fireworks a little earlier this year because June was bursting with myasthenia gravis awareness efforts! All across the country, people in the MG community worked tirelessly to inform others about MG and how it impacts those who live with it on a daily basis. Advocacy was also demonstrated beyond our borders, and it has truly been inspiring to see others around the world call attention to this rare disease. Nevertheless, as we enter July, we at the MGA know that the advocacy work doesn’t stop here.
If you have myasthenia like me, you know this illness is a 24/7 job. Not a day goes by where I am not reminded of my MG. Whether I am taking a pill every 3 hours, assessing my fatigue, or prioritizing activities of daily living, I can feel the presence of my disease. As grateful as I am for all those who made a concerted effort to get the word out about MG this past June, I recognize that I have a duty not only as a patient but as a professional in the healthcare community to keep marching for MG patients.
So—what can you expect to see from the MGA for the rest of 2020? Things have obviously looked a little different this year, but for the most part, we have been able to stay connected. And although we are small, we are a mighty team; nothing can stop us from advocating for our MG family—not even a global pandemic. The parade for MG awareness must continue, no matter what month it is or what curveball is thrown at us.
Happy Independence Day, everybody! I may be celebrating the red, white, and blue this weekend but I will always be representing a little splash of teal everywhere I go. Have a safe and healthy holiday.
This blog post was written by Meridith O'Connor, St. Louis Program Coordinator of the Myasthenia Gravis Association.
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