What Is Stiff Person Syndrome? Celine Dion Announces Rare Disease Diagnosis | Smart News

Singer Celine Dion onstage during the 2016 Billboard Music Awards in Las Vegas, Nevada.

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Canadian pop star Celine Dion announced on Instagram this week the postponement of her upcoming tour due to a diagnosis of stiff person syndrome, a rare neurological disease that affects one in a million people.

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“I’ve been dealing with health issues for a long time and it’s been really hard for me to face these challenges and talk about everything I’ve been going through,” Dion says in her video. “I always give one hundred percent when I do my shows, but my condition doesn’t allow me to do that now.”

So what exactly is stiff person syndrome?

It is an autoimmune and neurological disorder that causes stiffness and spasms in the torso and extremities, debilitating pain, and chronic anxiety, according to the Stiff Person Syndrome Research Foundation. The spasms can occur randomly or in response to environmental stimuli like loud noises or emotional distress, and can last anywhere from seconds to hours, Pavan Tankha, medical director of comprehensive pain recovery at the Cleveland Clinic, told Nicole Stock of the New York Times. . . They can even be violent enough to dislocate joints or break bones.

“Imagine having the worst Charley Horse you could ever have, but it’s affecting a ton of muscles in your lower back and legs, and it’s constant,” Kunal Desai, a professor of neurology at Yale University, tells Lindsey Bever, Richard Sima, and the Washington Post. Annabelle Timsit. “It is very painful.”

Dion explains that the muscle spasms “affect every aspect of my daily life, sometimes causing difficulty walking and not allowing me to use my vocal cords to sing in the way I’m used to.”

While the cause of the condition is unknown, research suggests it may be the result of an incorrect response in the brain and spinal cord, according to CBS News’ Li Cohen. Some people with the syndrome have higher levels of antibodies against an enzyme called glutamic acid decarboxylase, or GAD65. This enzyme facilitates the formation of a neurotransmitter called GABA that “helps reduce nerve and muscle arousal,” according to the Stiff Person Syndrome Research Foundation.

The disease can affect anyone, but it occurs more in women and people between the ages of 20 and 50, and very rarely in children. There is currently no cure, but medications such as sedatives, muscle relaxants, and steroids can be used to relieve symptoms.

Earlier this year, Dion canceled several shows on her North American tour and Las Vegas residency, citing health concerns. Now, eight of her shows scheduled for summer 2023 will be canceled and her spring 2023 shows will be rescheduled for 2024.

“This is such a severe diagnosis, especially if you are an artist [on] the kind of world-class stage,” Simon Helfgott, a rheumatologist at Harvard Medical School, tells NBC News’ Aria Bendix. “It’s going to be very, very challenging to be able to continue.”

Stiff-person syndrome itself isn’t fatal, but it can be debilitating, and complications from the disease can lead to a shorter life expectancy, according to the Times. Although it is difficult to predict how the disease will progress, most people see worsening stiffness and spasms over time. “In some cases, the condition can stabilize and stay as it is. I have people who are like that, they’re no different now than they were 10 years ago,” Helfgott tells NBC. “In others, it’s a slow, subtle decline.”

Although Dion’s video was solemn, she says she remains optimistic. “I have a great team of doctors working by my side to help me get better and my precious children who support me and give me hope,” she says. “I am hopeful that I am on the road to recovery. This is my focus and I’m doing everything I can to recover.”

“I love them very much, and I really hope to see them again very soon,” he adds.

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