Celine Dion speaks on surviving Stiff Person Syndrome (2024)

Celine Dion speaks on surviving Stiff Person Syndrome (1)

Singer Celine Dion has spoken about her struggles after her diagnosis of Stiff Person Syndrome. (AP PHOTO)

Celine Dion says she doesn't know when she will be able to return to her world tour after being diagnosed with Stiff Person Syndrome (SPS), but clarified "there's one thing that will never stop, and that's the will".

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The Canadian singer cancelled her Las Vegas residency due to health concerns in 2021, before revealing her SPS diagnosis in December 2022 and cancelling her Courage World Tour.

Dion, whose best-known hits include My Heart Will Go On from the film Titanic, said she is learning to live with the disease, but hopes "that we'll find a miracle, a way to cure it".

"Five days a week I undergo athletic, physical and vocal therapy," the 56-year-old told Vogue France.

"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. At the beginning I would ask myself: 'Why me? How did this happen? What have I done? Is this my fault?'.

"Life doesn't give you any answers. You just have to live it. I have this illness for some unknown reason.

"The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it's over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself."

Dion said she had chosen to work with her "body and soul, from head to toe" alongside her medical team, who she described as a "gift".

"What's more, I have this strength within me. I know that nothing is going to stop me," Dion said, before confirming her goal is to see the Eiffel Tower again.

The main symptoms of SPS are muscle stiffening and spasming. There is no cure for the disease, but there are ways for it to be treated including through the use of muscle sedatives and relaxants.

Dion also addressed returning to complete her world tour.

"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. On the other hand, I don't just want to wait. It's morally hard to live from day to day.

"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," she added.

The superstar, who also sang Think Twice and It's All Coming Back To Me Now, received a standing ovation when she made a rare public appearance at the Grammy Awards earlier this year to present the album of the year prize.

In her Life In Looks video for Vogue France, she described the standing ovation as "very, very touching".

"It was very nerve-wracking, but at the same time, a big honour," Dion said.

"That magic. That excitement. To see the fans, to see the crowd. To see show business again. It took a lot, a lot out of me."

A new Prime Video documentary titled I Am: Celine Dion is set to detail her battle with SPS, with footage captured by Oscar-nominated filmmaker Irene Taylor over more than a year.

Dion has sold more than 250 million albums during her 40-year career, earning five Grammys and the Billboard Music Award lifetime achievement Icon Award.

Australian Associated Press

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Celine Dion speaks on surviving Stiff Person Syndrome (2024)

FAQs

Celine Dion speaks on surviving Stiff Person Syndrome? ›

Celine Dion has opened up about living with the rare neurological condition stiff person syndrome, saying, “nothing is going to stop me.” Speaking to Vogue France in an interview published Monday, the Canadian-born singer said she was, “well, but it's a lot of work,” adding: “I'm taking it one day at a time.”

Can a person recover from stiff person syndrome? ›

Although there is no treatment that cures stiff person syndrome, working with a specialist and maintaining symptom control can make it easier to live with the condition. SPS most commonly develops in people ages 40 to 50, but in rare cases, it occurs in children and older adults.

What is the life expectancy of someone with 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.

Do you lose weight with stiff person syndrome? ›

The spasms can either impact the entire body or just a specific area. The legs are the most commonly impacted area for these spasms and often lead to falls. The abdominal area can also experience spasms, causing a person to feel fuller faster and lead to unintended weight loss.

Is stiff person syndrome like ALS? ›

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.

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.

What is the root cause of stiff person syndrome? ›

Though the cause of Stiff Person Syndrome remains unknown, researchers suspect it may be caused by an autoimmune reaction. Specifically, the immune system seems to attack a protein called glutamic acid decarboxylase (GAD), which helps make a substance called gamma-aminobutyric acid (GABA).

Does stiff person syndrome affect the bowels? ›

Results: Of 240 individuals with SPSD, 32% reported GI symptoms, most were female (83.1%), and white (74%), with a median age at time of GI symptom onset of 50 ± 13 years. Most common symptoms reported were dysphagia (45%), constipation (40%), and nausea/vomiting (23%).

Who is more likely to get stiff person syndrome? ›

Women and people assigned female at birth (AFAB) are twice as likely to have SPS as men and people assigned male at birth (AMAB). SPS can develop at any age, but symptoms most often begin in your 30s and 40s. SPS is also associated with the presence of other autoimmune conditions, such as: Type 1 diabetes.

Which singer has stiff person syndrome? ›

An upcoming documentary will focus on Celine Dion's health. This summer, fans of the legendary singer will get a close-up look at her journey after she was diagnosed with stiff person syndrome. The film, titled "I Am: Celine Dion," will be available to stream on Prime Video starting June 25, 2024.

Do any celebrities have stiff person syndrome? ›

Celine Dion, 55, was diagnosed with Stiff Person Syndrome (SPS) in 2022, an extremely rare, long-term disorder that can cause painful muscle spasms and stiffness.

What celebrities have stiff person syndrome? ›

Céline Dion discusses living with stiff person syndrome: 'I want to be the best I can be' The singer was diagnosed with the rare autoimmune neurological disorder in 2022. Jessica is a staff writer at Entertainment Weekly, where she covers TV, movies, and pop culture.

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.

What is the old 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.

What disability did Stephen Hawking have? ›

Hawking was diagnosed with Amyotrophic Lateral Sclerosis (ALS), commonly referred to in the U.S. as Lou Gehrig's disease. As ALS progresses, the degeneration of motor neurons in the brain interfere with messages to muscles in the body. Eventually, muscles atrophy and voluntary control of muscles is lost.

Is stiff person syndrome a form of Parkinson's? ›

Particularly, some symptoms of SPS may lead to a misdiagnosis of parkinsonism, especially of atypical forms such as CBS. Both SPS and parkinsonian conditions feature an increased muscle tone. Stiffness in SPS is not always bilateral and occasionally involves facial muscles.

What famous people have stiff person syndrome? ›

Celine Dion's Stiff-Person Syndrome Is Progressing

Previously, she wrote about wellness, fitness, and their intersection with culture at GQ. Last year, Celine Dion revealed she was diagnosed with stiff-person syndrome, a rare neurological condition that causes muscular stiffness and spasms.

What can be done for stiff person syndrome? ›

With appropriate treatment, SPS symptoms may be kept under control. Several symptoms improve with oral diazepam (an anti-anxiety and muscle relaxant drug) or with drugs that alleviate muscle spasms, such as baclofen or gabapentin.

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 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.

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