What to know as Celine Dion cancels tour after stiff-person syndrome diagnosis

Celine Dion has canceled the remaining dates of her Courage world tour while she receives treatment for the rare neurological disorder stiff-person syndrome.

“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%,” the Canadian singer wrote in an announcement on Instagram.

Dion announced in December that she was diagnosed with an incurable neurological condition that causes muscle stiffness and spasms. The medical disorder has made it harder for her to walk and sing, she said at the time.

The rest of her European tour, which was going to include 42 performances in cities such as Amsterdam, Paris, London and Berlin, was scheduled to resume this August until April 2024. Dion previously performed 52 concerts before pausing the tour in March 2020 due to the pandemic.

“We do have every hope that someday soon, Celine will be able to come to all these cities in Europe to perform for her amazing fans, but that time simply is not now,” a news release Dion posted said.

Stiff-person syndrome experts say symptoms don’t usually affect a person’s life span and can be managed through treatment, but the disorder, believed to be autoimmune, can be painful. In some cases, it can affect the muscles used for speech and singing.

The Grammy-winning megastar, best known for “My Heart Will Go On” and other ’90s hits, was most recently involved in filming and recording new songs for “Love Again,” a rom-com starring Priyanka Chopra and Sam Heughan.

Dion ended her message to fans: “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!”

What is stiff-person syndrome? Celine Dion reveals rare condition.

What is stiff-person syndrome?

Stiff-person syndrome (SPS) is a rare, chronic neurological disorder that causes muscle stiffness and sometimes intense muscle spasms in the trunk and limbs, affecting posture, balance and the ability to use certain muscles. It usually has an autoimmune component and, in some cases, it can be progressive and painful, experts say.

Andrew McKeon, professor of neurology at the Mayo Clinic, said SPS affects nerves in the spinal cord and neurons in the brain that regulate movement. In other words, when the nervous system becomes overly excited, it can send too many signals to the muscles, causing them to stiffen or spasm.

A person’s “whole body can seize up when startled or in other situations,” putting them at risk for falls and injuries, he said.

The syndrome affects women at twice the rate of men, experts say, and although it can affect a person at any age, it is most often diagnosed among middle-aged people.

What are the symptoms of stiff-person syndrome?

SPS causes muscle stiffness, muscle aches and muscle spasms, often in the lower back and legs, which can make it difficult for some patients to walk. Those who have symptoms that are not well-controlled may need to use a walker or wheelchair to keep from falling or injuring themselves.

The muscle spasms are what neurologists call “stimulus sensitive” and can be provoked by a sudden noise, light touch or even emotional distress. One form of the condition can affect muscles that control the eyes, speech or singing or swallowing.

“Just imagine having the worst Charley Horse you can have but it’s affecting a ton of muscles in your lower back and legs — and it’s constant. It’s very painful,” said Kunal Desai, assistant professor of neurology at Yale University.

Chi-Ying “Roy” Lin, a neurology professor specializing in movement disorders at Baylor College of Medicine, said in the cases he has seen, patients “were very, extremely uncomfortable, and it’s usually very painful.”

“And when the pain occurs it’s very debilitating no matter what position, he added. “There’s basically no comfortable position for them to stay, either sitting or laying.”

The condition typically only affects skeletal muscles that we can control, and not smooth muscles or those found in the heart. It does not seem to affect cognition, but may be associated with anxiety.

What is the life expectancy for someone with stiff-person syndrome?

Although SPS is rare and not completely understood, experts say the syndrome does not typically have an effect on longevity, except in very rare circumstances in which muscles used for breathing or swallowing are compromised.

When symptoms are well-controlled, patients can live a relatively normal life. However, when the symptoms are not able to be managed, they can suffer significant impairments, experts say.

Lin said the main effect is on quality of life. “I don’t think for the cases I saw, their life quality ever comes back to like normal baseline,” Lin said.

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