Singer Celine Dion announced this week that she has a rare neurological condition that is affecting her ability to sing and forcing her to postpone her 2023 tour.
Dion used Instagram to tell fans she has Stiff Person Syndrome, a very rare disorder that causes muscle spasms and can be debilitating. She described a journey familiar to many who have rare conditions: It took years for doctors to diagnose her with the disease, which affects one in a million people, according to the National Organization for Rare Disorders (NORD).
“While we’re still learning about this rare condition, we now know this is what has been causing all the spasms I’ve been having,” Dion said in an emotional video that she recorded both in English and French. She has more than 5 million Instagram followers.
Stiff Person Syndrome affects more women than men, according to NORD, and could be an autoimmune disease, which is when the immune system attacks healthy tissue. Besides muscle spasms, symptoms include painful muscles, coordination problems, weight loss and difficulty talking. The severity of symptoms and their progression vary from patient to patient, NORD says.
Doctors diagnose the condition based on symptoms and the presence of certain antibodies. A research foundation for the disorder says it’s often mistaken for multiple sclerosis or Parkinson’s.
Dion, who has an international fan base, was born in Canada and discovered at a young age for her powerful voice, technical excellence and emotional interpretations. “My Heart Will Go On” from the film “Titanic,” has been downloaded more than 419 million times on Spotify. Her arena shows attract thousands and she filled seats nightly during a long-term Las Vegas residency.
Speaking slowly in the recorded message, Dion said she had a great team of doctors and was working every day with a sports medicine therapist to improve her strength. She said it hurt to announce that her 2023 European tour would be postponed.
“All I know is singing. It’s what I’ve done all my life and it’s what I love to do the most,” Dion said, “I have hope I’m on the road to recovery.”
It was the second time this year a global celebrity has announced they have a rare disease. In June, Justin Bieber cancelled performances to recover from Ramsay-Hunt syndrome, which caused partial facial paralysis. He has since returned to performing.
Both announcements gave enormous visibility to the rare conditions. Hours after Dion made the announcement, Google Trends reported more than two million searches for Stiff Person Syndrome.