June Is Dedicated to Myasthenia Gravis Awareness

www.myasthenia.org

Myasthenia gravis (MG) (Mai-uhs-thee-nee-uh   gra-vuhs) is a rare, chronic, heterogeneous, and unpredictable autoimmune disease.

MG results from a problem in signaling between nerves and muscles. This problem happens in the neuromuscular junction (NMJ), the place where nerve cells and muscles communicate. Generalized myasthenia gravis (gMG) is caused by antibodies in your immune system that get in the way of signals between nerves and muscles at the NMJ that can weaken muscles throughout the body.

Shanaz, a single mom and interior designer in Los Angeles, was living an active life in 2022 when she began experiencing trouble swallowing and was diagnosed with gastroesophageal disease. That diagnosis didn’t feel quite right to her. In 2023 her symptoms took a turn for the worse: She lost her vision and couldn’t talk or swallow. At that time, she was correctly diagnosed with gMG.

Those living with gMG may experience a variety of symptoms that can make activities of daily living very challenging – activities like talking, chewing, swallowing, breathing, brushing teeth or hair, or even getting up from a chair. Those living with gMG may appear healthy on the outside, but what is happening on the inside can seriously impact every part of life.

Shanaz’s story highlights the challenges of misdiagnoses and delayed diagnosis, and underscores the critical role of self-advocacy in navigating complex medical conditions. Shanaz will tell her story. She’ll be joined by Dr. Said Beydoun (Suh-eed Bay-doon) who will discuss the symptoms and triggers of gMG and a treatment option that addresses the underlying causes of the condition.

Interview courtesy: UCB, Inc. (References available on request)

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