If you’re among the estimated 36,000 to 60,000 people in the United States who have myasthenia gravis (MG), it might sometimes feel like you’re dealing with the disease on your own. However, it may be helpful to see public figures coming forward to talk about how they live with MG.

When well-known people share their stories about life with a rare disease, it can help raise awareness for a condition that many aren’t familiar with. Read on to learn about five public figures who have discussed their MG diagnosis.

1. Chess Star Henrique Mecking

Considered one of the greatest Brazilian chess players in history, Henrique Costa Mecking learned to play the game of skill 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 his career was interrupted when he experienced vision and muscle issues and was subsequently diagnosed with MG in 1978. He took a hiatus from the game, but after his symptoms subsided, 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,” Mecking said in an interview in 2011. 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.”

2. Chef Sean Brock

A James Beard Award-winning chef, 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.” A self-proclaimed workaholic, he hosted the Emmy Award-winning television show “Mind of a Chef,” produced by Anthony Bourdain, and was later featured on the popular Netflix series “Chef’s Table.” Brock is a visionary chef whose mission is to contribute to his “local community, culture, and cuisine in a lasting and impactful way.”

Brock 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. Since then, he has been able to look at the silver lining of living with a rare disease.

“I’ve gotten to know some pretty amazing people, and I’ve actually helped others reach a diagnosis,” he later said.

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, Rogers began experiencing unexpected symptoms. After a series of exams and tests, she was diagnosed with myasthenia gravis. She temporarily left the show to manage her health, and then returned to play her character once again. When she did, the producers wrote her diagnosis into the program so she could demonstrate to viewers 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 I looked like a bowling ball. And I’m a singer.”

She has continued to persevere as she manages her MG, appearing on “Days of Our Lives” nearly every week. In fact, Rogers now holds the title of the longest-running soap opera actor for a show that still airs.

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 MG 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 also serves as a distinguished industry professor at New York University, where his interest areas include number theory, large scale numerical computation, and mathematical physics.

“Myasthenia gravis is a funny thing,” Gregory 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 an MG diagnosis in 2006. Ever since she began managing the condition, Cheryl and her athlete son have worked together to spread the word.

Cheryl compares life with MG to the uniqueness of a snowflake. “It looks like everything is so good on the outside, and everything is shaped perfectly,” Dexter said about his mother’s outlook. “But on the inside, you can’t see what’s going on, and it vanishes and washes away. Each and every day, it can be something different. And then it washes away to something different the next day. It’s pretty special how she puts it.”

Find Your Team

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

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.