(BPT) – “I tell people it feels like when you’re drunk, but without the alcohol. So that means you can’t see straight, you can’t walk straight, you can’t talk. You’re wobbly and all over the place. That’s how I feel when I am having a myasthenia gravis flare up.”
Leah Gaitan-Diaz was 40 years old when she was diagnosed with myasthenia gravis (MG), a rare, chronic neuromuscular autoimmune disease that causes debilitating and potentially life-threatening muscle weakness.1 Though her four-year experience with MG has come with many challenges — including lack of understanding and support from some of the people in her life, leaving her job as a store manager and seeking permanent disability — Leah is raising her voice and sharing her MG story to help others with this disease know they are not alone.
Affecting approximately 60,000 people in the United States, MG begins with the immune system, which is supposed to protect the body from foreign substances. In MG patients, the immune system mistakenly attacks healthy proteins in skeletal muscles and weakens the signals from nerves to muscles, causing muscle weakness and fatigue.1-5 The most commonly affected muscles are those of the eyes and eyelids, the face, and upper arms and limbs.2 This can lead to difficulty seeing, chewing and swallowing, among other muscular actions. In severe cases, patients may experience a “myasthenic crisis,” which happens when the muscles necessary for breathing stop functioning.
“Women can become fatigued from our menstrual cycles, so when I told my doctor I was feeling fatigued, they said it was normal,” said Leah. “It’s not normal.”
People who have MG are often faced with misconceptions about their illness. Since MG is a rare disease, patients may feel isolated or disconnected from the world. While friends and family may never feel what they feel, they can try to understand.
This led argenx, an immunology company developing medicines for patients suffering from severe autoimmune diseases like MG, to create MG United, a platform for information, resources and online community engagement for patients and supporters affected by MG to come together, empathize, and be empowered to share their stories. MG United will feature patient and supporter stories, videos, and host virtual events to assure those within the MG community they are not alone.
If the face and throat muscles are impacted, MG can hinder a patient’s ability to speak.2 MG United offers a platform for patients like Leah to share their stories and be the voices for those who may be struggling to speak.
Today, Leah shares hope for others who have been diagnosed with MG. “Everything happens for a reason. Looking for that reason is going to take time, but just take it one day at a time. Life is too short. We should be happy, and everything will be okay. It’s easier said than done. But it’s true.”
To learn more about MG and the patient experience, visit MG-United.com.
References
- Howard, J. Clinical Overview of MG. Myasthenia Gravis Foundation of America. 2015. https://myasthenia.org/For-Professionals/Clinical-Overview-of-MG. Accessed May 2020.
- Myasthenia Gravis. National Organization for Rare Disorders. 2017. https://rarediseases.org/rare-diseases/myasthenia-gravis/. Accessed May 2020.
- Chaplin. J Allergy Clin Immunol. 2010;(2 Suppl 2):S3-23.
- Hoch et al. Nat. Med. 2001;7:365-368.
- Gilhus. N Engl J Med. 2016;375:2570-81.
