Celine Dion is ‘Working Hard’ and ‘Learning From the World’s Best Doctors’ After Being Diagnosed With Stiff Person Syndrome

In an interview with French newspaper Le Journal de Montreal last month, Claudette Dion provided a brief update on the health of her younger sister, Celine Dion, amid her ongoing battle with stiff person syndrome. The 55-year-old announced her diagnosis in December after years of keeping it a secret. 

“When I call, and Celine is busy I talk to my sister Linda, who lives with her, who tells me she is working hard,” Claudette said – adding that her sister is currently ‘studying and learning from the world’s best doctors specialized in this rare disease.’ As far as what she thinks her sister has to do – she says rest.

"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," Claudette continued in her interview. "We trust her. It is within her. She has always been very disciplined at everything she's ever accomplished in her life."

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According to the National Institute of Health (NIH), stiff person syndrome (SPS) is a ‘rare, progressive neurological disorder’ that can often cause stiff muscles in the torso, arms, and legs, and also result in a ‘greater sensitivity to noise, touch, and emotional distress’ – which could trigger or set off muscle spasms. 

As the disease progresses, people often find it difficult to move and/or walk – which, in turn, increases the likelihood of falls and subsequent injuries from those falls. In many cases, those struggling with SPS try to avoid leaving the house out of fear – knowing that something as harmless as a car horn could trigger it.

Celine Dion announced her diagnosis on Instagram in December – which she posted in both English and French. While it was the first her fans were hearing of her health struggles, it’s something she claimed to be dealing with for quite some time. Now that it’s affecting her performance, she wanted to explain why.

"I wasn't ready to say anything before, but I'm ready now. 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 – citing her difficulty with walking and loss of vocal chord abilities.  

Celine Dion Had to Cancel the Rest of Her Courage World Tour

Her health update in December was coupled with the postponement of her Courage World Tour – a tour that originally started in 2019, but was postponed as a result of the COVID-19 pandemic. Even when she announced the tour’s return, the delays, reschedules, and postponements continued – now we know why. 

In May 2023 – roughly five months after announcing her diagnosis and postponing the European leg of her tour – she took to Instagram to announce the official cancellation of the Courage World Tour. She described the decision as a ‘tremendous disappointment’ and cited her health as the primary reason why.

“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,” she wrote. 

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Stiff person syndrome is a rare disease that only affects roughly 1 in 1 million people and there are only about 5,000 people in the United States currently living with the disease – Celine Dion being one of them. While she’s unable to perform to the best of her ability, she does hope to recover and be on stage soon.