“It's not life-threatening. It's life-changing.”

At times, managing a rare condition can feel like an isolating reality: finding others who can truly relate can be a tall order (visit RareDiseases.info for information on rare disease support groups and communities), and it can be difficult to find high-profile patients to identify with. We’ve rounded up notable names who break with that status quo, bringing rare conditions—and the stories behind them—into the spotlight.

Sia

The chart-topping singer behind hits like “Chandelier” and “Cheap Thrills” shared her experience with Ehlers-Danlos syndrome on social media in 2019. Ehlers-Danlos is a group of disorders affecting connective tissue (those with the disorder can have hyperextended joints, skin with excessive stretching, and fragile tissues). “I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going," she declared in the post.

Selena Gomez, Toni Braxton, Seal

All three of these superstar singers are affected by lupus, an autoimmune disease in which the immune system attacks healthy tissue. Each has spoken out about the disorder, bringing awareness to the different effects and impacts it can have on patients. Seal, for example, has spoken about his facial scarring, which is the result of discoid lupus erythematosus, a particular subcategory of the disease which affects the skin rather than internal organs. Braxton has been candid about lupus symptoms such as fatigue, while Gomez shared her personal experience of receiving a kidney transplant (after a close friend donated a kidney for the procedure) with her massive social media following.

Emily V. Gordon

This filmmaker’s experience with Still’s disease was the inspiration for The Big Sick, the 2017 dramedy that earned her an Academy Award nomination for Best Original Screenplay. The film recounts Gordon’s true-life courtship with her husband, actor/comedian Kumail Nanjiani, and the unexpected turn their relationship took when her condition, which she hadn’t yet revealed to him, sent her into a months-long coma.

Miles Davis, Tionne “T-Boz” Watkins,

Larenz Tate

Jazz legend Davis, TLC songstress Watkins, and screen star Tate are among the celebrities who suffer from sickle cell anemia, a condition that affects the functionality and shape of the red blood cells and disproportionately impacts the African-American community. In Watkins’ 2017 memoir, A Sick Life, she describes achieving incredible personal and professional triumphs in spite of her condition.

Gaten Matarazzo

The 17-year-old star of Netflix hit Stranger Things has been vocal about his experience with cleidocranial dysplasia (CDC). CDC is a condition that impacts the development of bones and teeth, and in some cases may result in symptoms such as underdevelopment in the collarbones, abnormal dental development, and decreased bone density. Matarazzo has used social media to share details of the condition (including the sometimes costly operations required to address it), and even worked with the creators of Stranger Things to incorporate it into the storyline of his character, Dustin, who has CDC as well.

Robin Roberts

Veteran TV journalist and Good Morning America anchor Roberts had already been diagnosed with—and beat—breast cancer when she found out she had myelodysplastic syndrome, or MDS, a rare form of blood cancer that suppresses bone marrow’s ability to create red blood cells. She took a leave of absence from GMA to receive treatment for MDS, which included a bone marrow transplant from her sister. Roberts received her MDS diagnosis in 2012, and though she avoids using the term “remission,” in a 2018 interview she stated that there were no detectable cancer cells in her system.

Laurence Olivier & Aristotle Onassis

Olivier, the British stage and screen icon who is considered by many to be one of the greatest actors of all time, received a diagnosis of myasthenia gravis (MG) when he was in his sixties. MG is a rare autoimmune neuromuscular disorder that causes weakness in certain muscle groups. The condition also affected Onassis, the shipping tycoon and one-time husband of First Lady Jackie Kennedy Onassis.

Irfan Khan

Screen superstar Khan, whose career in Bollywood and Hollywood has spanned over three decades and 85 films, was diagnosed with a rare neuroendocrine disorder in 2018. After taking a yearlong hiatus from filming to undergo treatment, he resumed acting in April 2019. "Maybe somewhere in the pursuit of winning, we forget how much it means to be loved,” he said in a message shared on social media. "In our vulnerability, we are reminded.”

Peter Frampton

In 2019, British rock star Frampton shared that he has inclusion body myositis (IBM), a muscular inflammatory disease that can impact the strength of the legs, arms, and fingers. Frampton has been candid about how the condition has affected his ability to play the guitar (his signature instrument), while maintaining an optimistic outlook. “Look, it's not life-threatening,” he said in a 2019 interview. “It's life-changing.” In February 2019, the Johns Hopkins Myositis Center established the Peter Frampton Myositis Research Fund to support research on IBM.

Keala Settle

Settle, an actress who earned rave reviews in 2017 for her breakout role in The Greatest Showman, has spoken out about Moyamoya disease, a rare brain disorder that she was diagnosed with after suffering a stroke in 2018. She explained that the disease, which is characterized by blocked arteries at the base of the brain, had forced her to undergo a complicated 10-hour double bypass brain surgery just a week before she gave an acclaimed musical performance at the 2018 Academy Awards. “I’m more at peace than I’ve ever been; I can find the joy in things I never could,” she said in an interview six months later, which marked her first time speaking publicly about the condition. “This truly gave me another lease on life.”


Written By
Know Rare Team