In December 2022, Celine Dion revealed that – after months of struggling with health issues, including muscle spasms and stiffness – he had been officially diagnosed with the disease. Stiff Man Syndrome (SPS), a rare autoimmune disorder.
According to Mayo ClinicStiff Person Syndrome is “a rare motor dysfunction characterized by involuntary axial muscle stiffness and painful muscle spasms, often triggered by emotional stimuli or stimuli.”
Since the announcement, Dion has opened up with fans about how the situation has affected her life and career — and thanked them for their support every step of the way.
He was forced canceled her Courage World Tourwhich resumes in 2022 after taking a break due to COVID, but he has made several public appearances in recent months, including surprise on stage the 2024 GRAMMYs and some trips to hockey game with his son.
Now, as she prepares to share more about her recent struggles in a new documentary, Me: Celine Dion — which premiered June 25 on Prime Video — ET takes a look back at everything Dion had to say about her battle with Stiff Man Syndrome and her hopes for her future health and career.
April 2022 – The First Sign
Dion first announced that he was facing health problems in January 2022, when he was forced to retire cancel the rest of North America his Courage World Tour dates due to his slow recovery from “severe and persistent muscle spasms.”
“I really hope that I will go now, but I just have to be more patient and follow the regimen prescribed by the doctor,” he said at the time. “I can’t wait to be back on stage.”
But his problem remained, and in April 2022, the emotional message for fanshe announced more cancellations and delays.
The entertainer admitted that finding out about his health was “very slow, and I was very frustrated. I sought treatment from doctors, took medicine, but I still had seizures, and it took me a long time to recover from what I wanted.”
December 2022 – Official Announcement
On December 8, 2022, the singer is ready to share more about his ongoing health problems, officially announced her diagnosis.
“I’ve been dealing with health issues for a long time, and it’s really hard to face the challenge and talk about everything I’ve been through,” she said in an Instagram video. “Recently I have been diagnosed with a rare neurological disorder called Stiff Person Syndrome, which affects about one in a million people.”
“While we’re still learning about this rare condition, we now know it’s what’s causing all the spasms I’ve been having,” she said. when I walk, and it doesn’t allow me to use my vocal cords to sing like I used to.”
Dion broke down in tears when she announced the cancellation of her European tour dates, as she had done everything in her power to make it back.
“All I know is singing. It’s what I’ve done all my life and what I love the most. I miss you so much. I miss seeing you all, being on stage, performing for you,” he said. along. “I always give 100 percent when I do a show, but my situation does not allow me to give it to you now. For me to reach you again, I have no choice but to focus on my health now. And I have I hope I am on the road to recovery. This my focus and I’m doing everything I can to recover.
May 2023 – Total Cancellation
In May 2023, Dion had to admit to her fans that her health would prevent her from performing on stage in the future, as she announce the cancellation of the remaining 42 shows on her Courage World Tour.
“I’m sorry to disappoint you all again,” the singer said in a statement. “I’m working hard to rebuild my strength, but touring can be very difficult even when you’re 100 percent. It’s not fair that you keep postponing the show, and as much as it hurts my heart, it’s better that we cancel everything now until I’m really ready to get back on stage, I want you all to know, I’m not giving up…and I can’t wait any longer.
October 2023 – Hockey With the Boys
Dion made him first public appearance in nearly four years when he attended an NHL game between the Vegas Golden Knights and his hometown team, the Montreal Canadiens, on October 31, 2023.
Not only that, the singer brought along his three sons — 22-year-old René-Charles and 13-year-old twins Eddy and Nelson — and posed for a rare family photo as he greeted the Canadian players and staff. locker room after the game.
“The kids and I had so much fun visiting the Montreal Canadiens after the hockey game with the Vegas Golden Knights in Las Vegas Monday night,” Dion wrote in the post. “He played great, what a game!! Thanks for meeting us after the game, guys! It was memorable for all of us. Have a great season! – Celine xx… “
January 2024 – Documenting His Battle
In January 2024, Amazon MGM Studios announced that they had acquired worldwide rights to a full-length documentary about Dion’s ongoing health battle, directed by Oscar-nominated filmmaker Irene Taylor.
According to the film’s official synopsis, Me: Celine Dion is “an intimate exploration that takes viewers on a journey through the 55-year-old’s past and present. He revealed his battle with Stiff Person Syndrome (SPS) and the lengths he goes to to continue performing for his beloved and loyal fans.”
From visiting couture tour closets and personal effects to spending time in a recording studio, the documentary takes a never-before-seen look into the personal life of the global megastar. “An emotional, energetic, and poetic love letter to music, Me: Celine Dion took over a year of filming as the legendary singer continued her journey to an open and authentic life in the midst of her illness,” the description reads.
“These past few years have been a challenge for me, a journey from discovering my condition to learning how to live and manage it, but not allowing myself to define it,” Dion said in a press release for the doctor. “As the path to continue my performing career continues, I have realized that I have missed 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 unknown condition, to help others share this diagnosis.”
February 2024 – Gold GRAMMYs
Dion made a successful return to the public eye – for the first time since November 2023 – when she made a surprise appearance at the event. 2024 GRAMMY Awards to give the Album of the Year award, which he went to Taylor Swift midnight. Dion take the stage with the eldest son René-Charles.
Dion received great applause from the crowd and became more emotional in response to the warm welcome, saying, “Thank you all. I love you back. When I say I’m happy here, I really mean it from my heart.”
And while the diva looked as elegant as she did on stage, she wowed fans around the world when she was backstage as the Queen of Pop. show her tough voice while singing with GRAMMY nominated songwriter Sonyaé.
March 2024 – A Promise to Family and Fans
On March 15, 2024, Dion celebrated International Stiff Person Syndrome Awareness Day with inspiring Instagram posts where he vowed to “one day return to the stage and live a normal life.”
“Trying to overcome this autoimmune disorder is one of the most difficult experiences of my life,” he continued, “but I am determined to one day return to the stage and live a normal life. I am very grateful for the love and support of my children, family , the team and all of you!”
Expressing gratitude for the support she has received, Dion encouraged others fighting SPS around the world. “I want you to know you can do it! We can do it!” he shouted, expressing solidarity and strength.
April 2024 – Cover Girl
In April 2024, Dion was announced as the May cover star for French Vogueoffers a positive message in the midst of her health battle.
“I’m proud to take the photo French Vogue. I am very proud that, at 55, I have been asked to reveal my beauty,” said Dion in the Instagram caption of her stunning cover photo. “But what is beauty? Beauty is you, me, what’s inside, our dreams, now. Today, I am a woman who feels strong and positive about the future. One day.”
In an interview, she opened up about why she made the decision to document her recent struggles in her upcoming film.
“I wanted to make a documentary because it’s not a quick thing, and there’s no quick fix to what I’ve been through,” Dion said. “It’s not just about vocal training and doing Pilates. It’s physical and vocal rehabilitation, emotional and spiritual – the whole shebang. And I want this story to be told in a good way. I respect my fans and I’m enough for them to understand. the complete truth.”
May 2024 – Me: Celine Dion
The first trailer for Me: Celine Dion released on May 23, 2024, and features the singer’s tearful announcement, as well as behind-the-scenes moments like her return to the recording studio, her terrifying 9-1-1 call and the painful decision to cancel her tour.
“It’s not hard to do the show,” Dion says in the trailer, over footage of her taking her medication and sitting down in practice. “It’s hard to cancel a show. I work hard every day, but I have to admit this is a struggle. I miss it so much.”
“I just thought, if I could walk or walk, if I could walk or crawl…” she continued to cry, but ended the clip on an optimistic note: “I’m not going to stop.”
June 2024 – Open
Before the premiere of the documentary, Dion sat down with Today‘s Hoda Kotb for an interview about her condition, being honest on camera about the trials she’s faced since her diagnosis.
The singer shared that, for him, Stiff Man Syndrome first appeared in the throat – locking the muscles in such a way that “it feels like someone is holding you” when he tries to sing. It also causes spasms in the abdomen, spine, ribs and limbs, with Dion noting that the disease can be manifested by locking the limbs in certain positions, for example, when cooking or pointing the toes.
The convulsions even worsened over time, and the singer suffered a broken rib. But perhaps the pain is greater for the singer, for keeping the secret. Dion told Kotb that he felt he was “cheating the people who got me right now,” adding that there was a time when “I just couldn’t do it anymore.”
“I have to stop, take time to understand,” he lamented. “I have to raise my children. I have to hide. I have to try to be a hero. I feel like my body is abandoning me, holding on to my own dreams. And lying to me – the burden is too much.”
Dion’s full interview with Kotb will air on June 11 at 10 pm PT/ET. Me: Celine Dion debut June 25 on Perdana Video.
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