Celebrities with muscular dystrophy (MD) — including models, actors, and pro golfers — show the public that life with this condition can be fulfilling and packed with achievements.

Muscular dystrophy is a group of genetic disorders that cause muscle weakness and muscle wasting. The most common form, Duchenne muscular dystrophy (DMD), often leads to challenges like trouble moving, muscle pain, and slower growth. Although the symptoms of muscular dystrophy vary based on the type, they often affect daily activities.

If you or someone you know has muscular dystrophy, remember — you’re not alone. Many well-known individuals are using their platforms to increase awareness and offer hope.

1. Model and Actor Jillian Mercado

Jillian Mercado was a teenager when she was first diagnosed with spastic muscular dystrophy. Growing up in New York City, she wanted to pursue a career in fashion but felt discouraged because she didn’t see anyone like herself. “Ever since I can remember or have recollection, I’ve always been in a wheelchair,” she said in a 2018 interview with Glamour.

Mercado started out on the editorial side of fashion. “I saw how much thought went into what was being published. They’d be asking themselves how the content would serve the current generation of readers," Mercado told Allure, the magazine where she first worked as an intern.

Eventually, she started modeling, challenging standards of beauty as one of the few models with MD. She landed jobs with Target, Diesel, and Nordstrom, among other outlets. In 2019, she was cast in “The L Word” as one of television’s only actors with muscular dystrophy — or any visible physical disability. Since then, she has appeared in other shows.

“I was scared that people wouldn’t take me seriously. And that’s because there’s such an extreme lack of representation of the disability community,” Mercado explained to Future of Personal Health, an online publication. Mercado soon realized she was in a position to advocate for people with disabilities. “I’m a woman, I’m queer, I’m disabled, and I’m Latina, and all of those layers are so powerful that I think that’s what kind of drove me into being an activist and advocate,” she said.

Mercado’s goal is to change how people with disabilities are seen. “Most of the stories you hear about us in television and movies, they’re not our lives; and they’re always told by nondisabled people, which is very, very problematic,” she told Future of Personal Health, an online publication. But she also noted that she’s seen improvement: “I think that our generation especially, because of social media, can understand how we’re literally on this planet together, and that we should probably start acting that way.”

2. Golf Pro Morgan Hoffmann

Golf has always been central to Morgan Hoffman’s life. Ranked as the No. 1 amateur golfer worldwide, he was a star player with Oklahoma University’s prestigious golf program. He soon turned professional, competing in the four leading golf championships of the PGA Tour in 2015.

Then the rising golf star began noticing unusual changes in his body, including a loss of muscle strength. “I would have dreams at night of, like, these flesh-eating worms or something, like a line of them, just like eating muscle away. And that was silly, obviously. But I had no idea what it was,” Hoffmann told ESPN in 2023.

While continuing his pro golf career, Hoffmann began seeing doctors across the U.S., searching for answers. After five years, he was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) in 2017. This form of muscular dystrophy mostly affects the shoulder blades, upper arms, and face.

To improve his health, Hoffmann overhauled his diet and focused on eating clean, nutritious foods. Blood tests had shown toxins that he believed stemmed from exposure to pesticides and heavy metals from chemicals used on golf courses. He took time off from golfing and pursued holistic healing approaches. He and his wife, Chelsea Hoffmann, set up the Morgan Hoffmann Foundation in Costa Rica to help people with natural healing.

Hoffmann didn’t give up on golf and eventually played professionally again. “The last two years have been a lot of ups and downs and working on health still,” Hoffmann told Golfweek in 2024. “My goal is to get back on the PGA Tour.”

3. Actor Sophie Kim

When Netflix producers of “The Healing Powers of Dude” set out to cast an actor who uses a wheelchair in real life, they found Sophie Kim. She was cast thanks to abilityE, or abilityEntertainment, a talent agency that helps place people with disabilities in the entertainment industry.

Diagnosed with Ullrich congenital muscular dystrophy (UCMD) at age 2, Kim had no prior professional acting experience. She was just 13 when the show premiered.

Although people with disabilities had played TV roles before, Kim felt her situation was different: “It’s the first time I’ve ever heard, ‘This role is just for authentic wheelchair users,’” she said in an interview with Ability Magazine. “I think that means a lot to the community.”

Kim said she values her role as Amara because the character faces challenges that any other young person might have. “She is at her core just another one of the characters and she has a unique personality. She has the same struggles that an average middle schooler might face. I think that was one of the best things they did for her character,” Kim explained.

Her role provides Kim a way to help empower other young people with muscular dystrophy, she says. “I try to respond to everybody’s DMs [direct messages] and remind them to follow their dreams. I’m not saying it’s going to be easy, because it’s already a hard industry to crack and for disabled people, it’s even harder, but more doors are opening. And this was a sign of it,” she told The Talon, the student paper of Los Altos High School in California. “I just feel like I’m making a difference,” she added.

4. Comedian and Actor Gilbert Gottfried

Comedian and actor Gilbert Gottfried died of complications of myotonic dystrophy type 2 (DM2) in 2022 at age 67. Although rare, myotonic dystrophy is the most common type of muscular dystrophy that starts in adulthood.

Gottfried was known for his edgy humor and distinctive voice. He started as a stand-up comedian at 15, playing comedy clubs throughout New York City. He spent a brief time on the cast of “Saturday Night Live” and appeared in television shows and movies such as “Married… With Children,” “Beverly Hills Cop II,” “Problem Child,” and “Look Who’s Talking.” As a voice actor, Gottfried brought to life animated characters such as Iago, the wry parrot in Disney’s “Aladdin.” In 2017, the documentary “Gilbert” offered an in-depth look at Gottfried’s life and career.

Gottfried’s DM2 was not easy to diagnose, and his last years were difficult and painful, according to his widow, Dara Gottfried. “Unfortunately, most people — including MANY doctors — have never heard of it! Gilbert was undiagnosed for YEARS!” she wrote in a 2023 article in People. The condition was first identified about 30 years ago by researchers at the University of Rochester.

Now, the Gilbert Gottfried Myotonic Dystrophy Type 2 Research Fund focuses on fundraising and advocacy for people with DM2. “I am on a mission to raise awareness and research funds,” Gottfried’s daughter, Lily Gottfried, wrote on the University of Rochester website. “The money raised in Gilbert’s honor will go directly to research specifically for DM2 NOW! The U of Rochester is exploring innovative and promising treatments for DM2.”

Dara Gottfried is dedicated to raising awareness about DM2 and honoring Gilbert Gottfried’s legacy. “Gilbert used to talk about the comedy and tragedy masks,” she wrote. “He’d say, ‘Comedy and tragedy are roommates. Wherever tragedy is, comedy is looking over his shoulder and sticking its tongue out at him.’”

Find Your Team

On myMDteam, the site for people with muscular dystrophy and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with muscular dystrophy.

Do you have any role models with muscular dystrophy who have inspired you? Share your thoughts in the comments below or by posting on your Activities page.