Celine Dion Shares Health Updates Amid Stiff-Person Syndrome Diagnosis
- Oops!Something went wrong.Please try again later.
"Hearst Magazines and Yahoo may earn commission or revenue on some items through these links."
Celine Dion revealed that she was diagnosed with stiff-person syndrome in 2022.
The singer had her first fashion shoot in years with Vogue France.
Celine Dion is opening up about living with stiff-person syndrome in a new interview with Vogue France.
She shares, "I didn't fight the disease, it is still in me and forever. We will find, I hope, a miracle, a way to cure it with scientific research, but I must learn to live with it. So that's me, now with stiff person syndrome. Five days a week I do athletic, physical and vocal therapy. I work on my toes as much as my knees, my calves, my fingers, my singing, my voice... This is the condition with which I must learn to live now by stopping questioning myself. I started by saying to myself: why me? What happened? What did I do? Am I responsible? Life doesn't give you answers. You simply have to live it! I have this disease for some unknown reason. I have two choices. Either I train like an athlete and I work super hard or I disconnect and it's over, I stay at home, I listen to my songs, I stand in front of my mirror and I sing to myself. I chose to work with all my body and all my soul, from head to toe with a medical team. I want to be my best self. My goal is to see the Eiffel Tower again!"
Will she go back on stage? The six-time Grammy winner says, " I can't answer you. Because for four years, I told myself that I would not go back, that I am ready, that I am not ready… Today, I cannot tell you: “Yes, in four months.” I don't know... My body will tell me. On the other hand, I don't want to just wait. It's morally hard to live from day to day. It's difficult, I'm working very hard and tomorrow will be even more difficult. Tomorrow is another day. But there is one thing that will never stop, and that is wanting. It's the passion. This is the dream. It's determination.
This isn't the first time she's been honest about her battle. On March 15, the Grammy-winning singer celebrated International SPS Awareness Day with her family. In a photo posted to Instagram, Celine posed with her three sons—René-Charles, 23, and twins Nelson and Eddy, 13—and reflected on her journey with the neurological disorder.
"As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS)," she wrote. "Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible."
The message comes after Celine made a rare public appearance on March 9, flashing a thumbs-up to paparazzi and fans in New York City before getting into her SUV, per E! News. It's also on the heels of Celine’s recent outing at the 2024 Grammy Awards, which apparently boosted the singer’s mood, a source told Us Weekly. "She felt the love all around," the insider said. "It lifted her spirits."
Although the source said the 55-year-old has "good and bad days," she's working on combatting her symptoms with the help of "lots of physical therapy and voice exercises." A second insider told the publication that the star's "dream is to perform on stage again, and she’s not giving up."
The "My Heart Will Go On" singer revealed she was diagnosed stiff-person syndrome in December 2022. Stiff-person syndrome (or SPS) is a rare neurological disorder that impacts the central nervous system and presents like an autoimmune disorder, per the National Institute of Neurological Disorder and Stroke and Cleveland Clinic. The biggest effect is muscle spasms and, of course, stiffness. The disease can also cause sensitivity to light, noise, and stress, difficulty walking, shortness of breath, and unsteadiness and falling, according to Johns Hopkins Medicine.
There's not much concrete information on how stiff-person syndrome develops, but it's believed to be an autoimmune disorder where the immune system attacks healthy tissue. While it's extremely rare, it affects more women than men, per Johns Hopkins Medicine.
Ahead, here's everything to know about Celine's stiff-person syndrome diagnosis, treatment, health updates, and more.
December 2022: Celine revealed her stiff-person syndrome diagnosis.
Celine posted an emotional video to her Instagram, letting followers know that she'd been diagnosed with stiff-person syndrome.
In the video she explains that she's been dealing with problems with her health for a long time, and it's been difficult. "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."
The five-time Grammy winner told her fans "All I know is singing," before saying, "It's what I've done all my life and it's what I love to do the most."
Fans flooded her with love and support. One person wrote, "Love you so much my dear lady! Sending healing prayers to you. 🙏🙏🙏🙏," and another said, "Such a wonderful person, and singer. Just heartbroken to see Celine go through a hard time. I think she can do it, she’s a determined person too.Bless you and prayers for you, Celine. 💖🫂💖."
May 2023: Celine canceled her world tour.
Celine originally postponed and then ultimately canceled her Courage World Tour to work on getting her strength back while preparing to perform on stage again. She shared the heartbreaking news with her Instagram followers, saying:
“I’m so sorry to disappoint all of you once again. I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100%. It’s not fair to you to keep postponing the shows, and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again. I want you all to know, I’m not giving up… and I can’t wait to see you again!” Celine wrote in a statement, shared on her Instagram.
Celine had completed the first leg of her tour, an impressive 52 dates in North America before the pandemic forced the tour to pause in March 2020. The tour was scheduled to begin in Amsterdam on August 26, 2023 and then take a break after an October 4, 2023 performance in Helsinki. Celine was due to resume the tour beginning March 6, 2024 in Prague and to perform until the final night on April 22, 2024 in London.
“We do have every hope that someday soon, Celine will be able to come to all of these cities in Europe to perform for her amazing fans, but that time simply is not now,” her team shared in a statement.
"I want you all to know, I’m not giving up… and I can’t wait to see you again!” – Celine xx…" she captioned her Instagram post.
August 2023: Claudette gave a hopeful update on Celine's health.
In August 2023, Claudette told HELLO! Canada that Celine was "doing everything to recover" and that "she's a strong woman."
She explained that since it's a pretty rare illness, they only know a little about it. She looked back on the symptoms her sister was facing, "there are spasms—they're impossible to control." Claudette compared it to jumping awake at night because of a cramp in the leg. "It's a bit like that, but in all muscles."
Claudette believed that Celine just needed to rest, and said that she's "spent all her life above it all, trying to be the biggest and strongest. At some point, your 'little' heart and 'little' body is speaking to you. It's important," she told Le Journal de Montreal, which is translated from French.
She shared that unfortunately there's little they can do to support her or even alleviate her pain, though she is working with doctors who specialize in stiff-person syndrome.
October 31, 2023: Celine returned to the public eye after nearly a year.
On October 31, 2023 Celine made her first public appearance since her diagnosis, per Billboard. She attended an Montreal Canadiens NHL game in Las Vegas with her three sons, René-Charles, 22, and Nelson and Eddy, both 13.
The Canadiens posted this video of the artist in the locker room with Montreal head coach Martin St. Louis. The two chatted and then posed for a picture with her sons with some of the players.
Quand des emblèmes du Québec se rencontrent à Las Vegas...@celinedion 🤝 Habs#GoHabsGo pic.twitter.com/VUodJPWPDx
— Canadiens Montréal (@CanadiensMTL) October 31, 2023
A day later, Celine posted a series of pictures from the night out with her boys.
"My boys and I had such a fun time visiting with the Montreal Canadiens after their hockey game with Vegas Golden Knights in Las Vegas Monday night. They played so well, what a game!! Thank you for meeting us after the game, guys! That was memorable for all of us. Have a great season! - Celine xx…," she wrote in the caption.
December 2023: Claudette shared that Celine 'doesn't have control over her muscles.'
Celine's sister, Claudette Dion, said that the singer "doesn't have control over her muscles" in a December 2023 interview with 7 Jours (via translation from French). "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," she told the publication.
Claudette added,"It's true that in both our dreams and hers, the goal is to return to the stage. In what capacity? I don't know."
December 27, 2023: The Québec Philharmonic Orchestra honored Celine.
In late December, the Québec Philharmonic Orchestra honored Celine with a tribute called Céline Symphonique, per Le Journal de Montréal, which has been translated from French.
Nearly 1,800 people gathered to honor Celine and celebrate her music, per the outlet. The conductor even began the evening with a touching tribute.
“Welcome to this symphonic celebration of our national Celine. We want to remind her that we miss her and that we can't wait to see her again," conductor Alexandre Da Costa said, Le Journal de Montréal reported. Several of Celine’s family members attended the tribute, and Da Costa honored them, as well, thanking them for being in attendance.
The conductor ended the show with some parting words of encouragement to Celine. He said, “Celine, we love you as an artist, as a human with a heart of gold, as an intergalactic ambassador. What would make us most happy is to have you on stage with us.”
December 2023: Celine remains optimistic.
Despite the challenges of the last few years, Celine remains optimistic, a source told Life & Style last month. “She’s always managed to remain optimistic during the toughest of times,” the insider said.
January 2024: Prime Video acquired rights to Celine’s documentary.
On January 30, Celine posted a black-and-white picture of herself smiling on Instagram to announce her feature-length documentary, I Am: Celine Dion. In the caption, she shared that the film was directed by Oscar-nominated Irene Taylor, and will be released on Prime Video globally.
“This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me,” Celine wrote. “As the road to resuming my performing career continues, I have realized how much I have missed it, of being able to see my fans. During this absence, I decided I wanted to document this part of my life, to try to raise awareness of this little-known condition, to help others who share this diagnosis.”
The documentary was acquired by Amazon MGM Studios and takes viewers on a journey following Celine’s life and career, including her battle with stiff-person syndrome, her persistence to perform for her fans, and her commitment to living an “open and authentic life amidst illness,” per Amazon’s press release.
The press release states that the documentary was produced by Sony Music Vision in partnership with Sony Music Entertainment Canada, as well as Vermilion Films. The release date has not been announced yet.
February 2024: Celine made a rare appearance at the Grammy Awards.
Celine, who is a five-time Grammy winner, appeared at the 2024 Grammy Awards to present Taylor Swift with the Album of the Year award for Midnights. Celine received a standing ovation when she walked onstage. “Thank you all, I love you right back. When I say that I'm happy to be here, I really mean it from my heart," she said, before adding that people should “never take for granted” what music can do for others.
But there was some drama around her appearance. When Taylor came onstage to accept her award, she didn’t really acknowledge Celine—she just took her award and moved on—and people on social media were in an uproar over it. Just a sample on Instagram: “Celine... honestly wished you handed the award to someone who acknowledged your greatest. What a low moment.”
Celine and Taylor quickly squashed rumors of any beef, though, posing together backstage while smiling broadly and with their arms around each other.
February 2024: Celine's stylist said she was "healthy and happy" at the Grammys.
Stylist Law Roach, who accompanied Celine to the Grammys, had the singer decked out in a baby pink Valentino gown with a pleated bodice and some serious Tiffany & Co. bling: a 12+ carat diamond necklace, 6-carat pear-shaped cocktail ring, and shiny diamond bracelets.
Law posted a photo with the singer on Instagram, telling everyone how wonderful it was to be by her side again.
"This makes me so much Joy! Not just to dress my Queen again but the fact that she’s HEALTHY AND HAPPY! The UNIVERSE always PROTECTS and PROVIDES Thank you @maisonvalentino @pppiccioli @f3nardi @tiffanyandco @michaelmclaughlin2 @matthewreisman and of course Thank you Celine for allowing me to share this triumphant moment with you," he wrote.
The enthusiastic reaction to the Celine's surprise appearance reportedly inspired the singer, a source told Us Weekly.
"She felt the love all around," the insider said. "It lifted her spirits."
The same source said that she's been "doing lots of physical therapy and voice exercises," with another insider telling the publication that she one day dreams of gracing the stage once again.
The neurological disorder has even "empowered her and changed her mindset," per the insider.
March 2024: Celine gives a thumbs up as she’s spotted in NYC
On March 9, Celine was walking in New York in a long black coat beside two men who seemed to be her security team, per E! News. Before hopping in an SUV, the singer flashed a smile and a thumbs up at fans and paparazzi gathered.
March 2024: Celine says "trying to overcome" SPS is "one of the hardest experiences" of her life
In honor of International SPS Awareness Day, Celine posted a rare photo with her three children—René-Charles, 23, and twins Nelson and Eddy, 13. In the snap, the proud mama has her arms around her younger sons while René-Charles poses up front.
In her message, Celine explained how difficult her journey has been, reiterating that she dreams of performing again.
"Today the world recognizes International SPS Awareness Day," she wrote. "As many of you know, in the fall of 2022, I was diagnosed with Stiff Person Syndrome (SPS). Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible."
The singer added that she's "deeply grateful for the love and support from my kids, family, team and all of you," while sending "encouragement" to others suffering from the disease.
You Might Also Like
