Singer Celine Dion shared an update about her diagnosis of stiff-person syndrome alongside a rare photo of herself and her three sons.
In her post, Dion noted that March 15 was International Stiff-Person Syndrome Awareness Day, saying that “trying to overcome” stiff-person syndrome was “one of the hardest experiences” of her life.
Dion announced her diagnosis with the condition in 2022, saying at the time that the illness had impacted her ability to sing and walk, and in May 2023, she canceled all upcoming performance dates. In December 2023, Dion’s sister Claudette told a French publication that the singer no longer had control of her muscles.
“I remain determined to one day get back onto the stage and to live as normal of a life as possible,” Dion wrote. “I am deeply grateful for the love and support from my kids, family, team and all of you!”
The photo shows Dion and her three sons, René-Charles, Nelson and Eddy Angélil smiling on a podium for K1 Speed, a go-kart racing organization. Dion shares all three sons with her late husband and manager, René Angélil. Angélil died in 2016.
Dion ended her message with a note of support for others struggling with stiff-person syndrome.
“I want to send my encouragement and support to all those around the world that have been affected by SPS,” the star wrote. “I want you to know you can do it! We can do it!”
Kerry Breen is a reporter and news editor at CBSNews.com. A graduate of New York University’s Arthur L. Carter School of Journalism, she previously worked at NBC News’ TODAY Digital. She covers current events, breaking news and issues including substance use.
A new documentary about Céline Dion and her diagnosis of stiff person syndrome (SPS) is in the works, with Amazon MGM landing the worldwide rights to the film.
The documentary, titled I Am: Céline Dion, follows the Quebec chanteuse as she is diagnosed with SPS and navigates her first year living with the neurological condition.
“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,” Dion, 55, said in a statement.
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Dion shares that she is optimistic about the future and still plans to return to singing.
“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 help others who share this diagnosis.”
The synopsis for the doc reads: “From visiting her couture touring wardrobe and personal effects to spending time in the recording studio, the documentary captures a global megastar’s never-before-seen private life. An emotional, energetic, and poetic love letter to music, I Am: Celine Dion captures more than a year of filming as the legendary singer navigates her journey toward living an open and authentic life amidst illness.”
“I’m so sorry to disappoint all of you once again,” she said in a statement. “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 per cent.
I’m so sorry to disappoint all of you once again… and even though it breaks my heart, it’s best that we cancel everything until I’m really ready to be back on stage… I’m not giving up… and I can’t wait to see you again!” – Celine xx… More info👉https://t.co/DHUch7W7OFpic.twitter.com/bgszxVd1za
The move came after she postponed her return to her Las Vegas residency in 2021, citing medical issues.
This past December, Dion’s sister, Claudette Dion told French-language news site 7 Jours that her sister can no longer control certain body movement, but that the ultimate goal is “to return to the stage.”
“When I call her and she’s busy, I speak to my sister Linda who lives with her and tells me that she’s working hard. She’s listening to the top researchers in the field of this rare disease as much as possible,” Claudette told Le Journal at the time.
Celine Dion’s sister says singer has lost control of her muscles due to stiff person syndrome
The cause of SPS, an extremely rare disease, is still unknown, according to Yale Medicine, “but researchers suspect that it may be the result of an autoimmune reaction where the body attacks nerve cells in the central nervous system that control muscle movement.”
The name doesn’t do justice to the pain and life-changing symptoms the syndrome causes, Tara Zier, founder of the Stiff Person Syndrome Research Foundation, told The Canadian Press last year.
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“A lot of people have challenges with mobility. Many have assisted devices for mobility, walkers, wheelchairs. Some people are bedridden,” she said.
FILE – Celine Dion announced in May she is cancelling her “Courage” world tour as she continues to receive treatment for stiff person syndrome.
Graham Hughes / The Canadian Press
The Stiff Person Syndrome Research Foundation says “the most common symptoms of SPS are muscle rigidity, stiffness and spasms in the muscles of the trunk including the back and limbs.”
These can be triggered by environmental stimuli, like loud noises or emotional stress.
“The muscle spasms can be so severe they cause the person to fall down. The muscles gradually relax after the stimulus is gone,” the Yale Medicine website states.
While there is no cure for SPS, when doctors treat patients with this condition, Yale Medicine says they focus on managing the symptoms with medications “such as sedatives, muscle relaxants, and steroids.”
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Celine Dion struggling to find medications for health battle, sister shares
Claudette is updating fans on how her sister Celine Dion is going in her ongoing battle with stiff-person syndrome.
This comes after the artist took a step back from performing last year to manage her health. Now, per Claudette, the neurological disorder has caused Celine Dion, age 55, to lose control of her muscles.
“She works hard, but she has no control over her muscles. What makes me sad is she was also so disciplined,” Claudette reportedly told French publication 7 Jours.
As mentioned, Dion let fans in on her health struggles in December 2022 via social media. In a short clip, she revealed that doctors diagnosed her with stiff-person syndrome after trying to pinpoint the cause of her spasms. Dion added that it was “really difficult” for her to “talk about everything” she had been experiencing.
At the time, she was already having trouble walking and using her vocal cords like she used to. However, she reassured fans that she had a “great team” of medical specialists and the support of her three children, René-Charles and twins Nelson and Eddy.
Watch her full announcement below.
The effects of the rare disorder forced Celine Dion to cancel all of her 2023 shows. In her Dec. 2022 announcement, she mentioned they’d be rescheduled to 2024. However, by May 2023, Dion had canceled the remainder of her world tour. Now, it’s unclear if she’ll ever touch a mic again.
“Vocal cords are muscles, but so is the heart. That’s what gets to me. Because it’s one in a million case, scientists don’t have much research on the topic because it didn’t affect that many people,” Claudette reportedly said.
There’s no cure for stiff-person syndrome, it is only managed with medications such as muscle relaxers. In addition to stiff muscles that can lead to falls and related injuries, people diagnosed with the disorder also experience greater sensitivity to noise, touch, and emotional distress. The symptoms can appear between ages 30 and 60, per the National Institute of Neurological Disorders and Stroke.
Despite this nightmare for their family, Claudette added that Celine Dion has received an output of love and support since the reveal.
“If you only knew how many calls we receive at the [Foundation Maman Dion for disadvantaged kids] to hear from Céline,” Claudette said. “People tell us they love her and pray for her. She gets so many messages, gifts, blessed crucifixes.”
Since then, she has gone on to cancel the rest of her world tour, which was supposed to take the singer to Europe and the U.K. this fall and next spring.
“I’m so sorry to disappoint all of you once again,” Dion, 55, said in a May 26 statement. “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 per cent.
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I’m so sorry to disappoint all of you once again… and even though it breaks my heart, it’s best that we cancel everything until I’m really ready to be back on stage… I’m not giving up… and I can’t wait to see you again!” – Celine xx… More info👉https://t.co/DHUch7W7OFpic.twitter.com/bgszxVd1za
“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!”
“When I call her and she’s busy, I speak to my sister Linda who lives with her and tells me that she’s working hard. She’s listening to the top researchers in the field of this rare disease as much as possible,” she told Le Journal.
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“I honestly think that she mostly needs to rest. She always goes above and beyond, she always tries to be the best and top of her game. At one point, your heart and your body are trying to tell you something. It’s important to listen to it.”
What is ‘Stiff-Person Syndrome’?
When she revealed her diagnosis with the disease, the singer said at the time that she had been “dealing with problems with [her] health for a long time.”
The cause of this extremely rare disease is still unknown, according to the Yale Medicine website, “but researchers suspect that it may be the result of an autoimmune reaction where the body attacks nerve cells in the central nervous system that control muscle movement.”
The name doesn’t do justice to the pain and life-changing symptoms the syndrome causes, Tara Zier, founder of the Stiff Person Syndrome Research Foundation, told The Canadian Press earlier this year.
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“A lot of people have challenges with mobility. Many have assisted devices for mobility, walkers, wheelchairs. Some people are bedridden,” she said.
The Stiff Person Syndrome Research Foundation says, “the most common symptoms of SPS are muscle rigidity, stiffness and spasms in the muscles of the trunk including the back and limbs.”
FILE – Singer Celine Dion performs during her Courage tour in Quebec City on Sept. 18, 2019. Dion has put a halt on all performing after being diagnosed stiff person syndrome.
Jacques Boissinot / The Canadian Press
These can be triggered by environmental stimuli, like loud noises, or emotional stress according to Yale Medicine.
“The muscle spasms can be so severe they cause the person to fall down. The muscles gradually relax after the stimulus is gone,” the Yale Medicine website states.
While there is no cure for SPS, when doctors treat patients with this condition, Yale Medicine says they focus on managing the symptoms with medications “such as sedatives, muscle relaxants, and steroids.”
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Claudette told Le Journal that her sister has seen little improvement with her health, but the family is hoping for the best.
Celine Dion announced Friday that she has been forced to cancel the remaining dates of her world tour as she continues her recovery from a rare neurological disorder known as stiff-person syndrome.
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After several delays due to a rare neurological disorder, legendary Canadian singer Céline Dion has cancelled the rest of her world tour.
The superstar apologized to her devoted fans Friday, saying it’s not fair to keep postponing shows. Dion said she is not ready to perform for the European and U.K. tour dates that had been set to run from August through October, and in March and April 2024.
“I’m so sorry to disappoint all of you once again,” Dion, 55, said in a statement. “I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100 per cent.
“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!”
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I’m so sorry to disappoint all of you once again… and even though it breaks my heart, it’s best that we cancel everything until I’m really ready to be back on stage… I’m not giving up… and I can’t wait to see you again!” – Celine xx… More info👉https://t.co/DHUch7W7OFpic.twitter.com/bgszxVd1za
The singer began the Courage world tour with 52 dates in North America back in 2019, but her European stops were postponed by the onset of the COVID-19 pandemic. They were further delayed when her health issues emerged.
In late 2022, Dion revealed she was recently diagnosed with a neurological disorder called stiff-person syndrome. The condition, which is rare, is characterized by sudden and severe muscle spasms.
The Quebec chanteuse has said the spasms affected her daily life, made it difficult to walk and prevented her from using her vocal cords to sing the way she’s used to. At the time, she cancelled and postponed an array of dates to focus on her health.
The statement says Dion’s medical team continues to evaluate and treat her condition.
Anyone who purchased a ticket for the cancelled concert dates can get a refund through the original point of sale. A full list of cancelled concert dates can be found on Dion’s website.
“We do have every hope that someday soon, Céline 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,” the tour update stated.
— with files from The Canadian Press
Celine Dion fans protest Rolling Stone over omission from ‘best singers’ list
Superstar singer Céline Dion on Thursday announced the release of her latest single, “Love Again” — the first song she has put out since sharing publicly about her rare neurological disorder.
“Love Again” was made for the upcoming movie of the same name starring Priyanka Chopra Jonas and Sam Heughan, and is just one of five Dion tracks that will be featured in the film.
The full soundtrack, which features those five new Dion songs, will be available to listeners on May 12, according to the Instagram announcement.
The movie, which releases on May 5, is a romantic comedy/drama about a woman who is coping with the death of her fiancé, and the new and unexpected connection she makes with a journalist through texting.
Dion is also making her acting debut in “Love Again,” where she plays herself getting profiled in a journalistic piece. The lyrics music video for the track shows snippets of Dion’s acting in scenes with Heughan.
In December, Dion announced she had to postpone her spring 2023 shows and cancel eight summer 2023 concerts after being diagnosed with stiff-person syndrome.
The unusual disorder causes the body to become rigid and sensitive to touch, noise and emotional distress, which can cause muscle spasms, according to the National Institute of Neurological Disorders and Stroke.
Canadian pop singer Céline Dion is promising her fans new music this week, after a rare neurological disorder forced her to cancel or postpone concerts to concentrate on her health.
The Quebec-born singer announced on social media that the new music would drop Thursday morning.
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Dion announced in December that she has “stiff person syndrome,” which is a condition characterized by sudden severe muscle spasms.
She said last year that the spasms affected her daily life, made it difficult to walk and prevented her from using her vocal cords to sing the way she’s used to.
The diagnosis forced her to postpone a number of European concert dates that were scheduled for earlier this year, and cancel a run of shows from May to July.
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Dion’s brief social media message did not provide any details on the music she’ll release, and did not give an update on her touring plans. Her most recent studio album was 2019’s “Courage.”
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According to the National Center for Advancing Translational Sciences, there are fewer than 5,000 known cases of stiff-person syndrome in the U.S. The symptoms of the disorder can begin at any point in a patient’s life. However, it is most commonly noticed in adulthood.
What is stiff-person syndrome?
According to The Stiff Person Syndrome Research Foundation website, this condition is an incurable disorder that causes progressive muscle rigidity and spasms. Those diagnosed with the disorder can be disabled, bedridden or unable to care for themselves.
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The cause of this extremely rare disease is still unknown, according to the Yale Medicine website, “but researchers suspect that it may be the result of an autoimmune reaction where the body attacks nerve cells in the central nervous system that control muscle movement.”
The name doesn’t do justice to the pain and life-changing symptoms the syndrome causes, Tara Zier, founder of the Stiff Person Syndrome Research Foundation, told The Canadian Press on Thursday.
“A lot of people have challenges with mobility. Many have assisted devices for mobility, walkers, wheelchairs. Some people are bedridden,” she said.
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The Stiff Person Syndrome Research Foundation says, “the most common symptoms of SPS are muscle rigidity, stiffness and spasms in the muscles of the trunk including the back and limbs.”
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These can be triggered by environmental stimuli, like loud noises, or emotional stress according to Yale Medicine.
“The muscle spasms can be so severe they cause the person to fall down. The muscles gradually relax after the stimulus is gone,” the Yale Medicine website states.
About one or two people in a million are affected by SPS, according to the Stiff Person Syndrome Center at Johns Hopkins Medicine.
Although that’s the rate that is generally reported, researchers don’t know for sure, Dr. Marinos Dalakas, director of the neuromuscular division at the Thomas Jefferson School of Medicine in Philadelphia, told The Canadian Press on Friday.
The number of cases involving the rare disease could be higher because people are so often misdiagnosed, said Dalakas, who is also a member of the medical advisory board for The Stiff Person Syndrome Research Foundation.
Common misdiagnoses include Parkinson’s disease, multiple sclerosis and psychiatric disorders, he said.
How long does it take to diagnose SPS?
The condition takes, on average, five to seven years to diagnose, according to the Stiff Person Syndrome Research Foundation.
“Since it is so rare, very often it is not recognized by medical providers. Neurologists, especially movement disorder neurologists, neuromuscular neurologists, and neuro immunologists are the usual SPS experts,” said the foundation on their website.
Yale Medicine says that “reaching a diagnosis for Stiff Person Syndrome can be difficult” and a comprehensive examination of the patients takes place in order to confirm the diagnosis, like doing blood tests and spinal fluid analysis.
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“When conducting those tests, your doctor is looking for elevated levels of anti-glutamic acid decarboxylase (GAD) antibodies,” their website states.
Yale Medicine explains that the immune system in a patient who may have stiff-person syndrome “seems to attack a protein called glutamic acid decarboxylase (GAD), which helps make a substance called gamma-aminobutyric acid (GABA).”
“GABA helps regulate motor neurons by decreasing their activity,” it adds.
Low levels of GABA can cause those neurons to fire continuously even when they’re not supposed to, according to Yale Medicine.
“About 60-80 percent of Stiff Person Syndrome patients have anti-GAD antibodies in their blood,” it says.
Are there treatments or a cure?
According to Yale and the foundation, there is no cure for Stiff Person Syndrome.
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When doctors treat patients with this condition, Yale Medicine says they focus on managing the symptoms with medications “such as sedatives, muscle relaxants, and steroids.”
Medications need to be tailored to each patient, depending on their symptoms, Dr. Marinos Dalakas, director of the neuromuscular division at the Thomas Jefferson School of Medicine in Philadelphia, told The Canadian Press.
Commonly prescribed treatments for stiff person syndrome include diazepam, which can both help relieve muscle spasms and reduce severe anxiety, as well as muscle relaxants and anti-seizure medications like gabapentin.
Specialists may also do a physical examination of the muscles or use electromyography (EMG) to assess muscle and neurological function.
Dalakas said the earlier patients are diagnosed and treated, the better their outcomes tend to be.
— With files from Global News’ Sarah Do Couto and The Canadian Press
Beloved French balladeer, Celine Dion, announced in an emotional video today that she’s been diagnosed with Stiff-Person Syndrome and will be unable to embark on her European tour in February.
Despite suffering from muscle spasms for years, Celine Dion continued to perform any chance she was given. Dion – widely known as “The Priestess of Pop” – performed over 808 concert shows and 1,141 residency shows from 1990-2020.
This rare neurological condition affects about one in a million people. Her diagnosis causes Dion to experience muscle spasms that affect her bodily functions as well as her vocal cords. Dion admits her diagnosis has made it so she cannot walk or sing like she used to, and is, therefore, unable to give her typical groundbreaking performances. And if you know anything about Celine Dion, it’s that she won’t give anything less than 100%.
Stiff-Person’s Syndrome’s symptoms include stiffening of the torso and limbs, long episodes of muscle spasms, and difficulty walking. The muscle spasms Dion experiences can be triggered by environmental factors such as loud noises or emotional stress.
“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 herself and fans alike remain hopeful that she’s on the road to recovery. And she’s reassured everyone that she has a great team of doctors working with her. One thing that’s abundantly clear: she’s doing everything she can to get back on the road and do what she loves most.
Thanks to Celine, we have the emblematic Titanic anthem, “My Heart Will Go On” and countless other ballads. We’re hoping for her recovery and will be listening to every Celine Dion album in her honor.
Legendary Canadian singer Céline Dion has rescheduled several European tour dates due to a recent diagnosis of a rare neurological disorder called stiff-person syndrome.
In two videos posted Thursday to Dion’s social media accounts (both in English and French), she claimed the debilitating disease does not allow her “to sing the way I’m used to.”
Stiff-person syndrome is an incurable disorder that causes progressive muscle rigidity and spasms. Those diagnosed with the disorder can be disabled, bedridden or unable to care for themselves, according to The Stiff Person Syndrome Research Foundation.
For Dion, 54, she said the muscle spasms she suffers “affect every aspect of my daily life.”
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She continued, tearfully telling fans that the disorder is “sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I’m used to.”
“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,” she said.
Dion was intensely regretful that her diagnosis will make her unable to launch the European leg of her tour in February. Her 2023 tour has been rescheduled for the following year. Eight of Dion’s 2023 performances, from May 31 to July 17, have been cancelled altogether.
Still, the My Heart Will Go On singer assured fans that she, her doctors and her family are doing everything in their power to help her condition improve.
François Legault, the premier of Québec, sympathized with Dion’s diagnosis on Thursday morning. While on his way to attend question period in the National Assembly, Legault told reporters he hopes Dion “gets well as soon as possible.”
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“We’re so proud of her. And she’s coming from Charlemagne in my riding. So, it’s important,” Legault said.
At Queen’s Park in Toronto, a children’s choir gave a tribute to Dion and performed My Heart Will Go On.
They normally sing Christmas carols, but today at Queens Park a children’s choir featured a tribute to Celine Dion after her awful diagnosis. #onpolipic.twitter.com/uNs7BUoepY
Dion said she is working with a sports medicine therapist every day to increase her strength and get her into performance shape.
“I miss you so much. I miss seeing all of you,” Dion told her fans. “I always give 100 per cent when I do my shows, but my condition is not allowing me to give you that right now.”
Earlier this year, Dion postponed her world tour due to “severe and persistent muscle spasms.”
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Information about Dion’s tour and rescheduling can be found on her website.
The National Center for Advancing Translational Sciences reported there are fewer than 5,000 known cases of stiff-person syndrome in the U.S. The symptoms of the disorder can begin at any point in a patient’s life, though it is most commonly noticed in adulthood.
