Celine Dion shares health updates amid stiff-person syndrome diagnosis

celine dion 66th grammy awards
Celine Dion shares health updates Kevin Mazur - Getty Images

Celine Dion is sharing how she stays strong amid her stiff-person syndrome diagnosis.

On April 22, the singer graced the cover of Vogue France with a daring, high-fashion photo shoot. And, in a accompanying Q&A with the outlet, Celine opened up about her hopes for her future.

'I haven’t beat the disease, as it's still within me and always will be,' she said. 'I hope that we'll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it. So that's me, now with Stiff Person Syndrome.'

The cover comes amid the news that her documentary, I Am: Céline Dion, will be released on June 25. It's directed by Academy Award nominee Irene Taylor and will give viewers 'a raw and honest behind-the-scenes look at the iconic superstar’s struggle with a life-altering illness,' according a message shared jointly by the streamer, Amazon MGM Studios, and Céline herself.

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.

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 greatness. What a low moment.'

Celine and Taylor quickly squashed rumours of any beef, though, posing together backstage while smiling broadly and with their arms around each other.

celine dion taylor swift 66th grammy awards
Celine Dion and Taylor Swift hugging backstage at the Grammys.Kevin Mazur - Getty Images

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 gave 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 said '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.

April 2024: Celine’s documentary got a release date.

I Am: Céline Dion will be released worldwide on Prime Video on June 25, Prime Video announced in April. The documentary is directed by Oscar-nominated director Irene Taylor, who was recognized for her work on 2009's The Final Inch, which documents the efforts to eradicate polo.

The documentary is set to be a 'love letter' to Celine’s fans and 'highlights the music that has guided her life while also showcasing the resilience of the human spirit,' a joint Instagram post from Celine and Prime Video reads. The post also offered viewers' first glimpse of the documentary in the form of a photo of Celine, who appears determined while raising her right fist.

This isn’t Celine’s first documentary. The 2010 movie Celine Dion: Through the Eyes of the World tracked the singer as she embarked on her first world tour in a decade. It featured footage of the singer onstage, backstage, and hanging out with family.

April 2024: Celine revealed her intense physical, athletic, and vocal therapy regimen.

That same month, Celine graced the cover of Vogue France, baring all in a topless shoot. In an accompanying Q&A with the publication, Celine shared more about her daily routine while living with SPS.

'Five days a week I undergo athletic, physical and vocal therapy. I work on my toes, my knees, my calves, my fingers, my singing, my voice,' she told the publication. 'I have to learn to live with it now and stop questioning myself.'

Immediately after she was diagnosed, Celine said she would ask herself: 'Why me? How did this happen? What have I done? Is this my fault?' But now, she's grateful for her family, friends, and medical team for helping her heal.

'Life doesn't give you any answers. You just have to live it! I have this illness for some unknown reason,' she said. 'The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself. I've chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!'

But Celine couldn't give fans an answer on when she would tour again, saying, 'My body will tell me.'

'For four years I've been saying to myself that I'm not going back, that I'm ready, that I'm not ready...as things stand, I can't stand here and say to you, 'Yes, in four months.' I don't know,' she said. 'On the other hand, I don't just want to wait...I'm working very hard and tomorrow will be even harder. Tomorrow is another day. But there's one thing that will never stop, and that's the will. It's the passion. It's the dream. It's the determination.'

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