I was first diagnosed with Myasthenia Gravis (MG) in adolescence around the age of 12. I was experiencing double vision, droopy eyelids, the inability to smile, and weakness in my arms and legs. I remember becoming clumsy. I was an active 7th grader and suddenly I had a hard time staying on my feet. On the basketball team, I often tripped mid-stride on the court and was known for fouling. I frequently fell down the stairs at school while trying to hurry to my next class. One of the most memorable events, was when I collapsed in the middle of a show choir dance performance. I tried to get up and instead flopped around like a fish out of water until my classmates helped me off the stage. My mom was in the crowd and realized something was seriously wrong. I was fortunate to have been diagnosed early with MG. The physical difficulty of school resulted in starting a home-bound schooling program. My thymus had become so enlarged that it took over my chest cavity and was cutting off heart values. This impacted circulation to my limbs. My hands and feet would become ice cold! By the age of 14, my thymus gland was removed, and I had beat death. I was in ICU on a ventilator for over a week. I was given high doses of steroids that results in a weight gain of over 100 pounds. My skin was stretched tissue paper thin all over my body. As abruptly as it all started, it ended. At a church camp meeting, I experienced a spontaneous and miraculous healing. I went home, threw out all my medications and knew my life was about to change. I was revived with a new zest for life. I started high school and focused on working off the excessive weight by getting involved with lots of activities. I was motivated. I did lots of impossible things for a person with MG like walk 25 miles at one-time and climb Pikes Peak. I enjoyed nearly 25 symptom free years of life. I never expected to face MG again. Nevertheless, after graduating from graduate school and starting work in 2017, I began noticing some minor symptoms. Then in October 2021, I got COVID and things rapidly worsened. My stability steadily declined and in December 2021, I was hospitalized due to a MG flare. Fortunately, the expert care of the hospital staff helped me avoid intubation and a feeding tube. After 10 days in the hospital, I was sent home (in time for Christmas) with home health care. I've spent the last 5 months bed, chair, and wheelchair bound. I'm no longer working and spend most of my days in stillness. My life has been flipped upside down. It's been a shocker that the exact same medication and maintenance regime from 25 years ago is still being used as the primary treatment.
The surprise of how little progress towards treatment or a cure has shaken me. The need for peer support and greater comprehension for this gap caused me to get involved with the Myasthenia Gravis Foundation of America (MGFA). The MGFA is a 501(c)(3) non-profit that helps create connections, enhance the lives of people impacted, and aims to improve care with the hopes of obtaining a cure. I've become inspired by the people (like me) who are fighting for a better future for people with MG. One way this work is done is through an annual fundraiser call the Coast-to-Coast Walk. This year it is on November 12, 2022. I decided to sign-up as a team captain. I hope to get 20 team members to help me fundraise until November with the goal of raising a minimum of $2,740. Here are ways you can help:
1. Join my team to help me fundraise. http://donate.myasthenia.org/goto/SnailRace - Search my team 'Snail Race' to join the effort.
2. Join us to walk, roll, or ride on November 12, 2022. You presence helps bring awareness. Ask to be added to the Facebook page!
3. Participate in a fundraiser. First one, is in June in honor of MG Awareness Month. You can purchase a T-shirt.
4. Make a donation - https://bndfr.com/gwMrg in my honor.
The success of this annual fundraiser helps to alleviate the challenges faced by all those living with MG and their families. Please consider helping.
With deep gratitude,