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'.

"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.”

Has anyone ever recovered from stiff person syndrome? ›

There is no cure for Stiff Person Syndrome. When doctors treat patients with this condition, they focus on relieving symptoms with medications such as sedatives, muscle relaxants, and steroids. Intravenous Immunoglobulin and plasmapheresis, among other immunotherapies, may also be prescribed.

Can you get better from stiff person syndrome? ›

SPS was once known as stiff man syndrome, but it is more common in women. 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.

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.

Can you touch someone with stiff person syndrome? ›

Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms.

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 you go into remission with stiff person syndrome? ›

In a clinical trial with 10 patients with SPS, six patients continue the treatment chronically on an outpatient basis. However, three patients have complete remission of their symptoms, while seven patients only partially relieve symptoms [24].

What celebrities have stiff-man syndrome? ›

When singer Celine Dion recently announced that she was diagnosed with stiff person syndrome (SPS), it created an opportunity for many to learn about this rare autoimmune neurologic disorder that affects only one in a million people.

Which singer has stiff person syndrome? ›

Celine Dion stepped away from performing last year as she battled "stiff-person" syndrome, a rare neurological disorder that has affected her ability to walk and sing. Her sister, Claudette Dion, now says Dion doesn't have control of her muscles.

What is the root cause of stiff person syndrome? ›

It is frequently associated with other autoimmune diseases such as type-I diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don't yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.

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.

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.

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 affect memory? ›

Mood and anxiety disorders are associated with deficits in learning and memory, executive function, and attention—areas also impaired in SPSD and anti-GAD65 associated diseases (8, 9).

What did stiff person syndrome used to be called? ›

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 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.

Can SPS go into remission? ›

I learned Stiff Person Syndrome (SPS) is a neurological disorder with features of an autoimmune disease. Symptoms include debilitating pain and muscle spasms. Currently there is no cure. I found no indication that any patient had ever achieved full remission.

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 always progressive? ›

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.

What percentage of the population has stiff person syndrome? ›

Stiff-person syndrome (SPS) is a rare disorder seen in approximately one in one million people. Although it is rare, the symptoms and findings of a typical case should paint a clear clinical picture for those who are familiar with the disease.

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