How Raising Awareness is Changing the Myasthenia Gravis Landscape

Beth Stein, M.D., is the Chief of Neurology at St. Joseph’s Regional Medical Center, and works closely with the Myasthenia Gravis Foundation of America (MGFA).

Anaya Mitchell was diagnosed with myasthenia gravis (MG) in the Summer of 2013. She was 13 years old. Mitchell was referred to Rare Disease Report by the Myasthenia Gravis Foundation of America (MGFA).

In this video, the two of them explain how raising awareness is changing the landscape for patients with myasthenia gravis and leading to medical breakthroughs for the patient population.

Stein: It used to be considered a very rare disorder, and physicians didn’t know a lot about it for many years. As awareness has grown and education has grown, it has become very well understood. It has led to the development of wonderful drugs that are really changing the landscape for myasthenia.

Mitchell: I do try to raise awareness, I think, even among my own friend group. My friends are very educated on myasthenia, and they’re very educated on the things that I need and the things that would make me better. Personally, I work a lot with the MGFA — the national organization for myasthenia. I’m working with teens and spreading awareness for the teens with myasthenia, just because the illness isn’t very present in people under 40. We don’t get a lot of the resources. We don’t get a lot of time from people. I work with them in expanding their search for teens to talk to and look at. Making the subject so more open, so that it’s not taboo anymore and no one’s afraid or scared to address it in people under 18. I know for me, I was 12 when I first experiencing symptoms, and I think that if I had someone, even just a couple of years older than me, to walk me through the process, things would have gone a lot smoother.

Stein: The MGFA is a wonderful organization, but advocacy in general is extremely important. The greater awareness there is leads to more education, education leads to more drug innovation, and drug innovation leads to cure of disease. The MGFA really works for development of research, development of patient education, and awareness. It works for the development of support groups throughout the country. It’s phenomenal. There’s a new support group that just opened up in New Jersey, which is wonderful. It’s also developed huge social networks for patients. The emotional aspects of the patient can be very overwhelming, especially in patients who have refractory disease. You should never underestimate the emotional aspects of the disease because they can weigh on patients just as much as the physical aspects. The social network they can develop through advocacy and through these organizations can help change the patient’s experience with the disease and their recovery.

Mitchell: I think we first met the MGFA through my doctor. He was like, "This is someone you can reach out to. They have a focus group and people you can call if you have questions or want information. When I had reached out to them, they let me know that they had this tri-state walk every year. My mom and I went just to look around and see for the first time, and that was one of the best feelings I had ever had. Even though everyone there was older than me, it was a big crowd of people who knew exactly what I was going through. They knew exactly what all of this felt like.

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