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Celine Dion loses ability to control muscles due to stiff-person syndrome - but what is it?

los angeles, ca   march 02  singer celine dion attends disneys beauty and the beast premiere at el capitan theatre on march 2, 2017 in los angeles, california  photo by frazer harrisongetty images
Celine Dion no longer has 'control over muscles' Frazer Harrison - Getty Images

Celine Dion "doesn't have control over her muscles" according to her sister, who has shared a heartbreaking update on the singer's experience with the rare neurological disorder known as stiff-person syndrome.

The star had to cancel her world tour last December, following her incurable diagnosis. However, she dreams she will one day be able to return to the stage, her sister Claudette Dion shared.

"She's working hard, but she doesn't have control over her muscles. What breaks my heart is that she's always been disciplined," Claudette told 7 Jours. "She's always worked hard. Our mother always told her 'You're going to do it well, you're going to do it properly," her sister continued.

Claudette also revealed she supports Celine's dream to take to the stage again. "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," she said.

Celine shared her diagnosis with fans in a moving Instagram post, early December 2022. In the emotional video, the singer revealed that she has been dealing with health issues for quite "a long time", adding that she was recently diagnosed with stiff-person syndrome.

As Celine explained, the condition affects one in a million people. "I wasn't ready to say anything before, but I'm ready now," she said.

"While we're still learning about this rare condition, we now know this is what's been causing all of the spasms that I've been having."

Celine went on to explain that the spasms had started affecting "every aspect" of her life, causing difficulties when walking and when she sings. The 55-year-old shared that, due to her condition, she had to postpone her spring 2023 European shows of her world tour to 2024, cancelling eight of her summer shows from May to July.

"All I know is singing is what I've done all my life and it's what I love to do the most. I miss you so much and seeing all of you. Performing for you. But my condition is not allowing me to give you that right now."

Celine shared that she is prioritising focusing on her health in order to be able to perform again. She also acknowledged fans for their support and wishes: "I love you guys so much and I really hope I can see you again real soon."

"I have a great team of doctors working alongside me to help me get better," she said in the video. "And my precious children, who are supporting me and giving me hope. I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again," she continued, "But I have to admit, it’s been a struggle."

What is stiff-person syndrome?

Stiff-person syndrome, or SPS, is characterised by "fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms," according to the National Institute of Neurological Disorders and Stroke.

Over time people with SPS may develop abnormal, often hunched over postures. Some people may not be able to walk or move at all. Many fall frequently because they do not have the normal reflexes to catch themselves.

Scientists don't yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone wrong in the brain and spinal cord.

Who does stiff-person syndrome affect?

Research from the Stiff Person Syndrome Centre at Johns Hopkins Medicine says the condition affects about one in a million people. The first case was reported in the 1950s and was referred to originally as 'stiff man syndrome'.

Despite its initial name, the condition is found to affect twice as many women as men.

Is there a cure or treatment for stiff-person syndrome?

While there is no cure for SPS known just yet, there are treatments – including anti-anxiety medicines and muscle relaxants – that can have been shown to slow its progression in cases.

We’re sending all the love and strength to Celine❤️.

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