If you’re among the estimated 36,000 to 60,000 people in the United States who have myasthenia gravis, it might feel like you’re navigating this autoimmune disease on your own. Seeing celebrities with myasthenia gravis come forward to talk about their struggles and achievements can be an inspiration for those with the condition, as well as the general public.

When famous people share their stories about life with a rare disease, it can help raise awareness for a condition that many aren’t familiar with. Here are five public figures who have shared their experiences with a myasthenia gravis diagnosis.

When famous people share their stories about life with a rare disease, it can help raise awareness for a condition that many aren’t familiar with.

1. Chess Star Henrique Mecking

Considered one of the greatest Brazilian chess players in history, Henrique Costa Mecking learned to play the game when he was just 6 years old. He continued racking up wins throughout his teenage years.

As an adult, the chess grandmaster won tournaments across the globe and rose to a ranking of third in the world. But Henrique’s career was interrupted in 1978 when he began experiencing myasthenia gravis symptoms and was diagnosed with the condition. He took a long break from the game, but after his symptoms improved, he returned to chess in 1991 and continues playing competitively today.

“In 1979, I was almost dying, couldn’t chew, just ate liquid food, didn’t have the power even to brush my teeth anymore,” Henrique said in an interview in 2011 about his severe muscle weakness.

He not only got back to the game he loves but also aspired to be among the best once more. “I believe I will be back on top,” he said. “My rating will go up slowly, and my strength of play will highly increase also.” Henrique’s comeback has shown people around the world that he can still be a chess champion while living with myasthenia gravis.

2. Chef Sean Brock

A James Beard Award-winning chef, Sean Brock is the owner of three renowned restaurants in Tennessee. He is The New York Times best-selling author of two cookbooks, “Heritage” and “South.” This self-proclaimed workaholic hosted the Emmy Award-winning television show “Mind of a Chef,” produced by Anthony Bourdain. He was later featured on the popular Netflix series “Chef’s Table.” Sean is a visionary chef who has been called “the reigning kingpin of the American food scene” by Esquire magazine.

Sean once had a reputation as a hard-partying, hardworking, obsessive talent. But when he learned he had myasthenia gravis in 2016, the decision to slow down was essentially made for him. Sean has spoken out about his experience with myasthenia gravis. “It worsens with fatigue and stress. [...] So when I get stressed out, my vision goes double or my muscles feel like I ran a marathon,” he told Saveur magazine.

Having a serious health condition has helped Sean think about the work environment in his restaurants and how it can be healthier for the people who work there. He’s also contributed recipes for a cookbook called “Cooking Together” for the myasthenia gravis community that features dishes that are easy to make, easy to chew, and high in nutrition.

3. ‘Days of Our Lives’ Star Suzanne Rogers

Emmy Award-winning actress Suzanne Rogers has worked on Broadway and as a Rockette dancer, but she’s best known for her work on the soap opera “Days of Our Lives.” She joined the cast in 1973 and is still a key character today, having performed on the show for more than 50 years.

In 1984, Suzanne began experiencing unexpected symptoms. After a series of exams and tests, she received a diagnosis of myasthenia gravis. She temporarily left the show to manage her health and later returned to play her character once again. When she did, the producers wrote her diagnosis into the program so she could raise awareness on what someone with the condition might be going through.

“The disease affects people differently,” she said in an interview in the Los Angeles Times. “Some are affected in the limbs. I was affected in the throat and face. My face blew up so much that I looked like a bowling ball. And I’m a singer.”

She has continued to persevere as she manages her myasthenia gravis and regularly appears on “Days of Our Lives.”

4. Mathematician and Professor Gregory Chudnovsky

Gregory Chudnovsky and his brother David are known as two of the most brilliant mathematicians alive today. The brothers work together not just because their interests align but also because David helps Gregory with his mobility issues, which stem from a myasthenia gravis diagnosis.

Diagnosed with myasthenia gravis at just 12 years old, Gregory has lived most of his life with breathing difficulties and weak muscles. But that hasn’t stopped him from completing difficult research. Together with his brother, Gregory has published 12 books and 154 papers. Gregory and David are distinguished industry professors at New York University, with a focus on number theory and mathematical physics.

Gregory has been open about his diagnosis while maintaining his rigorous career in mathematics. “Myasthenia gravis is a funny thing,” he told The New Yorker in an interview. “In a sense, I’m very lucky, because I’m alive, and I’m alive after so many years. There is no standard prognosis.”

5. NFL Mom Cheryl Williams

NFL running back Dexter Williams has been playing professional football since 2019, but his commitment to raising awareness for myasthenia gravis started long before that. His mother, Cheryl Williams, received a myasthenia gravis diagnosis in 2006. Ever since she began managing the condition, Cheryl and her athlete son have worked together to spread the word. Dexter participated in the first documentary series about myasthenia gravis called “A Mystery to Me.”

Cheryl compares life with myasthenia gravis to the uniqueness of a snowflake. “It looks like everything is so good on the outside, and everything is shaped perfectly,” Dexter told Sports Illustrated magazine about his mother’s outlook. “But on the inside, you can’t see what’s going on, and it vanishes and washes away.”

In describing the series and how it raises myasthenia gravis awareness, Dexter said, “It shows how myasthenia gravis affects not just them but the people around them. It takes you into their world. Every person’s story is different because they don’t have the same symptoms, and their treatments may be different. You get a taste of three people’s lives, and it’s so heart-touching.”

Find Your Team

On MGteam, the social network for people living with myasthenia gravis and their loved ones, nearly 3,000 members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

Do you have any role models who are living with myasthenia gravis? Share your experience in the comments below, or start a conversation by posting on your Activities page.