Tennis champion Monica Celes has become the first person to openly discuss her fight with myasthenia gravis, a rare and incurable disease affecting the muscles.
As noted by the National Institute of Neuropathy and Stroke, this condition is classified as a chronic neuromuscular disease. It involves spontaneous muscle contractions that impact various parts of the body including the arms, legs, face, throat, and diaphragm—essential for tasks like breathing and swallowing.
“My journey with MG over the last five years hasn’t been easy,” Celes shared in a recent press release announcing her partnership with the immunology company Argenx. She expressed feelings of isolation and defeat, stating, “Many of the activities I enjoyed were physically impossible for me anymore.”
This collaboration aims to raise awareness about myasthenia gravis and to provide resources for those affected.
Understanding Myasthenia Gravis
According to Dr. Ernest Lee Murray, a certified neurologist, myasthenia gravis is classified as an autoimmune disease, where the body’s immune system mistakenly attacks the connection between nerves and muscles. He mentioned that symptoms can vary significantly throughout the day. They can be quite mild, like double eyelids, or more severe, affecting walking, breathing, and swallowing.
“Some patients who start with mild symptoms may experience a progression to more severe issues within a couple of years,” the doctor added, although others may only encounter problems with their eyes.
Experts point out that environmental factors, such as heat and fevers, can exacerbate symptoms. They suggested that exercise should be approached with caution, urging patients to go at their own pace. Other health issues, including COVID-19 and urinary tract infections, can lead to notable symptom flare-ups.
Murray emphasized the importance of informing healthcare providers about the diagnosis of myasthenia before starting new medications, as some, including certain antibiotics, could worsen the condition.
Typically, treatment involves medications like pyridostigmine, as well as immunosuppressive drugs aimed at minimizing the immune attack on the nerve-muscle connection.
While past treatments often relied on steroids, newer medications target the condition more specifically and may carry fewer side effects. It’s crucial to note that myasthenia gravis, while serious, is manageable. Many patients can lead relatively normal lives with appropriate medical oversight.
“With close monitoring and the right neurologist, treatment can be customized to enhance the quality of life,” said Murray. Anyone experiencing symptoms such as double vision or increased weakness should consult a doctor for further evaluation.
Diagnosis typically involves a combination of blood and neurological tests, and urgent care is essential for symptoms like difficulty breathing or swallowing.
Requests for comment from Monica Celes have been made, but no response has been received yet.
