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Tag: What is stiff-person syndrome?

  • Céline Dion’s sister shares heartbreaking update on singer’s health battle  | Globalnews.ca

    Céline Dion’s sister shares heartbreaking update on singer’s health battle | Globalnews.ca

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    Céline Dion‘s sister has revealed a heartbreaking update on the singer’s health as she continues to seek treatment for stiff-person syndrome.

    Speaking with Le Journal de Montréal, Claudette Dion said that another of their sisters, Linda, had moved in with Céline to help with her care.

    The 55-year-old chanteuse first revealed her diagnosis of stiff-person syndrome (SPS) to the public last December, saying the disease does not allow her “to sing the way I’m used to.”

    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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    “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!”

    The move came after she postponed her return to her Las Vegas residency in 2021, citing medical issues.

    Claudette has now revealed that the hit-maker is struggling to find any medications that work for her.

    “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.”


    Click to play video: 'What is ‘Stiff-Person Syndrome’?'


    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.

    “We can’t find any medicine that works, but having hope is important,” she said.

    &copy 2023 Global News, a division of Corus Entertainment Inc.

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    Michelle Butterfield

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  • Céline Dion reveals diagnosis of rare neurological disease: ‘It’s been really difficult for me’  | Globalnews.ca

    Céline Dion reveals diagnosis of rare neurological disease: ‘It’s been really difficult for me’ | Globalnews.ca

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    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.

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    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.

    The five-time Grammy award winner was hopeful she will sing again.

    “All I know is singing,” she said. “It’s what I’ve done all my life. And it’s what I love to do the most.”

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    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.

    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.

    &copy 2022 Global News, a division of Corus Entertainment Inc.

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    Sarah Do Couto

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