What Is Stiff-Person Syndrome? Inside Celine Dion’s Battle With the Disorder and How She’s Doing Now
In December 2022, Celine Dion revealed that she had been diagnosed with stiff-person syndrome (SPS) and had to postpone her tour dates as a result. Nearly one year later, a source exclusively told Life & Style that she was finally gaining control of her disorder. The songstress gave fans a new look at her battle with the disease in her June 2024 documentary, I Am: Celine Dion.
What Is Stiff-Person Syndrome? Symptoms and Causes
Stiff-person syndrome is a rare and progressive neurological disorder, according to the National Institute of Neurological Disorders and Stroke (NINDS). Its symptoms include “stiff muscles in the trunk (torso), arms and legs,” as well as “greater sensitivity to noise, touch and emotional distress, which can set off muscle spasms.” As the disorder progresses, a person with SPS might develop a hunched posture or become too disabled to walk or move. SPS can lead to frequent falls and result in serious injuries.
As the NINDS notes, SPS “affects twice as many females as males.” The exact cause of SPS remains unknown, but many experts believe the disorder is an autoimmune reaction where the immune system attacks a protein in the brain and spinal cord. SPS is often linked to other autoimmune disorders, including “type-I diabetes, thyroiditis, vitiligo and pernicious anemia.”
When Was Celine Dion Diagnosed With Stiff-Person Syndrome?
While it’s unclear exactly when Celine was diagnosed with SPS, she revealed the news of her diagnosis in December 2022 via an emotional Instagram video. The “My Heart Will Go On” singer announced that she was canceling and postponing some dates of her tour so that she could focus on battling the illness.
“Hello, everyone. I’m sorry it’s taken me so long to reach out to you. I miss you all so much and I can’t wait to be on stage talking to you in person,” she said at the time. “As you know, I’ve always been an open book and I wasn’t ready to say anything before, but I’m ready now. I’ve been dealing with problems with my health for a long time and it’s been really difficult for me to face these challenges and to talk about everything that I’ve been going through.”
Celine continued on to say that she had recently been diagnosed with a “very rare neurological disorder called the stiff-persons syndrome, which affects something like one in a million people.”
“While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having,” she added. “Unfortunately, these spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”
Celine canceled her North American tour dates in January 2023 and rescheduled her spring European tour dates to March and April 2024.
“I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again, but I have to admit it’s been a struggle,” she continued. “All I know is singing. It’s what I’ve done all my life and it’s what I love to do the most. I miss you so much. I miss seeing all of you, being on the stage performing for you. I always give a hundred percent when I do my shows, but my condition is now allowing me to give you that right now.”
Celine Dion Had SPS ‘Under Control’ in 2023
Celine came a long way since delivering that painful message in 2022. In October 2023, she was spotted in Las Vegas at the Montreal Canadiens vs. Vegas Golden Knights hockey game, where she appeared to be in good spirits. She was also spotted a week later at Katy Perry’s Las Vegas residency.
“Celine is done hiding,” a source exclusively told Life & Style at the time. “She’s been through hell with her stiff-person diagnosis and before that were years of confusion and fear, trying to figure out what was wrong. It has been a very long, difficult road. But with the help of her family and many doctors and therapists, she seems to finally have things under control.”
Though Celine was “feeling better,” the insider added that “she knows her limitations” and was not yet in a condition to perform.
Celine Dion's Sister Shared a SPS Update
Despite making progress, Celine's sister, Claudette Dion, shared in December 2023 that the singer's condition had declined. Telling 7 Jours that Celine "lost control of her muscles," Claudette added, "What breaks my heart is that she’s always been disciplined. She’s always worked hard. Our mother always told her, ‘You’re going to do it well. You’re going to do it properly.’”
“It’s true that in both our dreams and hers, the goal is to return to the stage," Claudette carried on. "In what capacity? I don’t know.”
Celine Dion Spoke About Her SPS Experience in ‘I Am: Celine Dion’ Documentary
The singer, who has made few public appearances since her diagnosis, attended the New York City premiere of her documentary, I Am: Celine Dion, in June 2024. The Prime Video documentary was set to chronicle her battle with the condition, and she delivered an emotional 10-minute speech thanking those who worked on the project.
Celine mentioned that her current condition is "good," thanks to the rehabilitation she has undergone.
“It’s five days a week. Sometimes we push it even further because I’m getting ready to perform,” she told Vanity Fair on the red carpet. “My passion as a performer will never disappear. So I am training, rehabilitating myself.”
She continued, “I’ve been so much about ‘the show must go on, I’m so strong, everything is okay, no problem,’ and I couldn't do this anymore. I was like, ‘Yes, the show will still go on, but you will know why I was not there yesterday and last year.’ My fans deserve to know why. I did not turn my back on them, and I want this documentary to tell the world and my fans the reasons why I have been away.”
