I thought that I had my life all planned out until I was diagnosed with Myasthenia Gravis in 2006, Wrong!
Life can change in an instant from what we had planned or even dreamed about. Life can change drastically with Myasthenia Gravis, also known as MG. MG is a rare chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscles. MG can impact a person's ability to see, walk, talk, breathe and smile. It is estimated that about 100,000 people in the U.S. have MG. It can affect people of all ages, genders, and race. There is no cure, but the Myasthenia Gravis Foundation of America (MGFA) is the only national organization dedicated to research, awareness and advocacy efforts to help MG patients.
I made the choice to persevere and become MG Strong, even when my body was weak. I have learned to stand firm as my own advocate, persevere, and most of all continue the journey as an Ambassador for Myasthenia Gravis wherever my journey may lead me.
I made the choice to not dwell on the past or worry about the future, but live each moment to the fullest, one day at a time. In 2014 I decided to step out of my comfort zone and became an advocate for MG and organize the Southern IL MG Walk for the region of Southern IL, MO, Western KY, Northwest TN, and Southern IN.
My goals have been to raise awareness, participation and donations in a large area surrounding Metropolis, Ill., known as the home of Superman. I did not know the background of the founding of the MGFA until 2016, which was quite interesting since I am from Metropolis with a large Superman statue on the square. The MGFA was formed in 1955, and the first chair of the foundation was George Reeves. He continued to be active in the foundation through the 50s.
Now as an Ambassador, I take bringing awareness everywhere my journey leads me, even on vacation. It is because I am MG strong that I took my awareness with me to Hawaii on vacation. With the help of a Kauai friend, we began the first MG walk in the state of Hawaii in February 2017.
I am MG Strong because as an Ambassador it allows me to share awareness with others, which do not know about MG, and it gives me the opportunity to let other MG patients know that they are not alone in the world with the rare neuromuscular disease. The 2018 Southern IL MG Walk is Saturday, October 13, in Metropolis at Washington Park. Registration begins at 9 a.m. and opening ceremony at 10 a.m. with MG Walk to follow. After the walk, I will be talking with the MG patients about the possibility of a support group in the region.
To form a team, go to www.mgwalk.org/southernillinois. If you want to join my team or make a donation to the MGFA, my link is http://join.mgwalk.org/paulaburnettmcginnis.
Ambassador for MG in Southern IL and Hawaii