Celine Dion talks battle with Stiff-Person Syndrome, life in Las Vegas and more (2024)

Celine Dion is opening up about her battle with Stiff-Person Syndrome, life with her kids in Las Vegas, her plans to appear onstage again and more.

Speaking to Vogue France in an interview published Monday, the Grammy winner, who announced she had been diagnosed with Stiff-Person Syndrome in 2022, gave an update on her health, sharing that she "hasn't beat the disease" and that "it's still within me and always will be."

"I hope that we'll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it," she explained. "Five days a week I undergo athletic, physical and vocal therapy. I work on my toes, my knees, my calves, my fingers, my singing, my voice... I have to learn to live with it now and stop questioning myself."

Dion said the love from her family, children, fans and her team has helped in her fight against the disease, a rare autoimmune neurological disorder with a spectrum of symptoms, according to the National Institute of Neurological Disorders and Stroke, a division of the National Institutes of Health.

"People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments," she added. "I have those means, and this is a gift. What's more, I have this strength within me. I know that nothing is going to stop me."

Several months after revealing her diagnosis in 2022, Dion announced the cancellation of the remaining dates of her Courage World Tour in 2023 and 2024.

Discussing whether she has plans to return to stage, Dion told Vogue France, "I can't answer that."

"Because for four years I've been saying to myself that I'm not going back, that I'm ready, that I'm not ready…. As things stand, I can't stand here and say to you: 'Yes, in four months.' I don't know.... My body will tell me," she said.

"On the other hand, I don't just want to wait. It's morally hard to live from day to day," she continued. "It's hard, I'm working very hard and tomorrow will be even harder. Tomorrow is another day. But there's one thing that will never stop, and that's the will. It's the passion. It's the dream. It's the determination."

Family life in Las Vegas

Dion shared her son René-Charles, 23, and twin boys Nelson and Eddy, 13, with her late husband René Angélil, who died of cancer in January 2016 at age 73.

Speaking with Vogue France, the "My Heart Will Go On" singer got candid about her life with her kids in Las Vegas, where she said she bought a house more than two decades ago.

"I had a house in Florida, but as I was traveling a lot when I was touring, we didn't go there anymore," she shared. "I had a house in Montréal, but on holiday, the children wanted to go to the beach. I got a home in Las Vegas when my eldest son was [1], [22] years ago today, and we have moved in here. I am 35 minutes away from work. That gives me the time to get ready to go to work."

She continued, "I can see my team, we joke around with each other, we rehearse singing… and then that gives me the chance to get on the road. I eat in the car, I get home, I see my children, and I can sleep in my own bed. I have the best of both worlds."

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Looking ahead, Dion told the outlet that she "feels strong and positive about the future" as she simply tries to enjoy her life journey, living "one day at a time."

"My dream is to live in the present," she said. "I am truly very lucky. And I am honored to be doing a photo shoot for Vogue France because although I had better health and beauty at 30, I didn't get asked to do one then. I am very proud that at 55, I am being asked to reveal my beauty."

"But what is beauty? Beauty is you, it's me, it's what's on the inside, it's our dreams, it's today," she added. "Beauty is what surrounds us…there are people that see it, and there are people that observe it."

Celine Dion talks battle with Stiff-Person Syndrome, life in Las Vegas and more (2024)

FAQs

What is life expectancy for stiff person syndrome? ›

Patients typically present with initial symptoms between 40 and 60 years, although the onset has been reported in patients who are younger than 40 years and older than 60 years. From symptom onset to death, the course of SPS can range from 6-28 years.

What triggers stiff person syndrome? ›

These can be triggered by environmental stimuli (like loud noises) or emotional stress. The muscle spasms can be so severe that they cause the person to fall down. The muscles gradually relax after the stimulus is gone. These symptoms can lead to difficulty walking and, over time, even greater disability.

Has anyone ever recovered from stiff person syndrome? ›

No treatment eliminates or cures SPS, but medications and other therapies can help manage symptoms and improve quality of life, and some treatments may help prevent disease progression.

How painful is stiff person syndrome? ›

People who have stiff person syndrome experience alternating rigidity and spasm in their muscles. Muscles can be so rigid that they feel like a board. And the muscle spasms, which are extremely painful and can be triggered by stress or other external factors, can create enough force to break bones.

Can you live a full life with stiff person syndrome? ›

According to MedicineNet, individuals diagnosed with stiff person syndrome can live between 6 to 28 years from the onset of symptoms before succumbing to the condition. While there is currently no cure for SPS, several treatments aim to manage symptoms or slow down the progression of the disorder.

Can stiff person syndrome go away? ›

Stiff person syndrome (SPS) is a rare chronic condition that causes muscle stiffness and painful muscle spasms. The severity of symptoms varies from person to person. There's no cure for SPS, but treatment can help manage symptoms and slow the progression of the syndrome.

What famous people have stiff person syndrome? ›

Last year, Celine Dion revealed she was diagnosed with stiff-person syndrome, a rare neurological condition that causes muscular stiffness and spasms. In a new interview, Dion's sister Claudette told 7 Jours that the star's disorder had progressed and she can no longer control her muscles.

Is stiff person syndrome a form of MS? ›

Background: Stiff person syndrome (SPS) is a rare neuroimmunological disorder presenting with a wide variety of signs and symptoms that mimic neuro-inflammatory diseases, such as multiple sclerosis (MS), thus delaying diagnosis.

What is another name for stiff person syndrome? ›

This condition was formerly named stiff-man syndrome and is also known as Moersch-Woltman Syndrome. The current clinical classification of SPS includes: Classic SPS. Partial SPS variants. Progressive encephalomyelitis with rigidity and myoclonus (PERM).

What foods should you avoid with stiff person syndrome? ›

According to medical research, people with SPS are gluten sensitive. Therefore, you should avoid gluten in your diet if you have stiff person syndrome.

Does stiff person syndrome cause dementia? ›

An elderly man with progressive dementia and concomitant development of stiff-man syndrome is described. He had not had stiff-man syndrome one year earlier, when he had only mild dementia. An association between stiff-man syndrome and dementia has not been previously described.

What is the best diet for stiff person syndrome? ›

Eventually, of paramount importance, a gluten-free diet showed great results in patients with stiff-person syndrome. In a study including 20 patients with SPS, the patients were recommended to adopt a gluten-free diet.

What singer has stiff person syndrome? ›

Celine Dion talks battle with Stiff-Person Syndrome, life in Las Vegas and more. The singer got candid about her life in a new interview. Celine Dion is opening up about her battle with Stiff-Person Syndrome, life with her kids in Las Vegas, her plans to appear onstage again and more.

What happens if you hug someone with stiff person syndrome? ›

People with SPS initially experience muscle stiffness or discomfort. As the disease progresses, muscle spasms and rigidity become more pronounced. These muscle spasms can last anywhere from a few minutes to several hours, and are triggered by unexpected noises, physical contact, stress and/or emotional anxiety.

How many people in the world have stiff person syndrome? ›

Stiff person syndrome is a rare disease affecting only one or two people per million. It commonly causes muscle stiffness and painful spasms that worsen over time. They can be triggered by a variety of things including sudden movement, cold temperature or unexpected loud noises.

Does stiff person syndrome progress? ›

Stiff person syndrome (SPS) is a rare acquired neurological disorder that most often causes progressive muscle stiffness (rigidity) and repeated episodes of painful muscle spasms. Muscular rigidity often fluctuates (i.e., grows worse and then improves) and usually occurs along with the muscle spasms.

Is ALS the same as stiff person syndrome? ›

SPS can be readily misdiagnosed as motor neuron disease (ALS or monomelic amyotrophy) if the clinical presentation of rigidity and exaggerated DTR is associated with LMN features.

References

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