Celebrities Diagnosed with Rare Diseases

June 25, 2024

No one living with a rare disease would wish it upon another person. But many people with a rare disease that is made worse by being too little known or discussed will find themselves wishing a famous celebrity would take up their cause. It’s easy to imagine all the media attention that might shine on your disease if Selena Gomez or Justin Beiber talked about it.  But in reality, celebrities tend not to take up rare disease causes unless it affects them directly or someone close to them.

Like anyone, celebrities need to take time to process a diagnosis. They may stay out of the spotlight until they feel comfortable appearing in public or talking about their diagnosis. Think of the stages of grief: denial, anger, bargaining, depression, and acceptance. After a rare disease diagnosis, the stages look like: diagnosis, seeking treatment options, becoming an advocate, telling your rare disease story, and in some cases, becoming involved in research. 

In 2022, Halsey (they, their, them) announced they had been diagnosed with Ehlers-Danlos syndrome, Sjorgen’s syndrome, mast cell activation syndrome and POTS (postural tachycardia syndrome). In 2024, they released a single, “The End” which tells the story of someone enduring doctors visits and treatments. In their social media post featuring the song, they tagged foundations for lupus, leukemia and lymphoma, which suggests a new diagnosis, but they did not reveal a diagnosis though. 

More about Halsey More Celebrities with Ehlers-Danlos Syndrome

Confronting the diagnosis and everything that follows takes time, but even if you don’t feel comfortable discussing your diagnosis, sharing whatever part of your story that you feel comfortable telling the world does help. For Halsey, it’s writing this song and sharing it with the world. For Celine Dion, it’s contributing to a documentary about her journey.

Dion revealed that she was diagnosed with Stiff Person Syndrome in 2022, and while her condition has slowed down her public appearances and performance schedule, it has not stopped her from talking about her condition. A new documentary released in June 2024 will highlight her career and her life-changing diagnosis and journey. 

More about Celine’s documentary

Other well-known public figures may not share their stories through their art or work, but they will talk about their diagnosis and experiences in the press because it affects their everyday life, and their schedules. Since his Ramsay-Hunt diagnosis in 2022, Justin Bieber has had to cancel several concert appearances. In 2023, the late  Sen. Dianne Feinstein (D-CA) was diagnosed with Ramsay-Hunt as well after a shingles infection, and took time away from the Senate during her recovery.  

Justin Beiber’s Ramsay Hunt diagnosis

Dianne Feinstein’s Ramsay-Hunt diagnosis

It’s never too late to share your story, as former TLC member Tionne “T-Boz” Watkins showed when she opened up about her sickle cell disease diagnosis. When T-Boz was diagnosed with sickle cell as a child, she was told she wouldn’t live past 30. While she has surpassed that milestone, it hasn’t been easy given the hurdles that sickle cell disease has thrown her way, including going into a coma after the birth of her daughter, and a risky surgery to remove a benign brain tumor that could have led to the loss of her speech, balance, and hearing functions. She is thriving despite the incurable condition, and has talked about her diagnosis while promoting a wellness line and a documentary about TLC that debuted in 2023.

T-Boz Watkins’ Sickle Cell diagnosis

Celebrities sharing their stories may help make it easier for the not as well known to share their rare disease stories. And even if you’re not gracing the covers of People and Star Magazines, you are a celebrity in the rare disease world!

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