Celine Dion 'doesn't have control of her muscles', her sister says. What to know about Stiff Person Syndrome

The singer's sister Claudette Dion has said "here are some who have lost hope" in a magazine interview.

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LONDON, ENGLAND - JULY 05: Celine Dion performs live at Barclaycard Presents British Summer Time Hyde Park at Hyde Park on July 05, 2019 in London, England. (Photo by Samir Hussein/Redferns)
Celine Dion performs opened up about her diagnosis in late 2022. (Photo by Samir Hussein/Redferns)

Celine Dion's sister has revealed more about the singer's battle with Stiff Person Syndrome, one year after sharing the news about her diagnosis.

In an interview with Canada's french-language magazine 7 Jours, Claudette Dion said Celine "doesn't have control of her muscles."

The star's older sister shared that although Celine wants to return to stage, she's not sure what that will look like considering her health.

"There are some who have lost hope because it is a disease that is not [very well] known," Claudette Dion told 7 Jours. "What pains me is that she has always been disciplined. She's always worked hard. Our mother always told her, 'You're going to do it well, you're going to do it properly.'"

This is the second time Claudette has opened up about her sister's health. In a HELLO! Canada interview published in the late summer, Claudette said her sister is "doing everything to recover. She's a strong woman."

She claimed not much is known about the illness yet. "There are spasms — they're impossible to control. You know people often jump up in the night because of a cramp in the leg or the calf? It's a bit like that, but in all muscles," the sister added. "There's little we can do to support her, to alleviate her pain," she admitted, adding she still hopes researchers will find a remedy.

In the spring of 2023, Celine Dion cancelled her Courage world tour due to the illness.

The Quebec-born singer announced the cancellations of her remaining 2023/24 shows on X (aka Twitter).

"Even though it breaks my heart, it's best that we cancel everything until I'm really ready to be back on stage...I'm not giving up," Dion tweeted.

The 55-year-old shared her Stiff Person Syndrome (SPS) diagnosis in late 2022. The rare condition, which causes severe and persistent muscle spasms, "prevents her from performing," reads the announcement.

"Celine is working hard on her recovery, but at this time is unable to successfully prepare for and perform the remainder of her tour."

LONDON, ENGLAND - JULY 05: Celine Dion performs live at Barclaycard Presents British Summer Time Hyde Park at Hyde Park on July 05, 2019 in London, England. (Photo by Samir Hussein/Redferns)
Dion first shared her Stiff Person Syndrome diagnosis in Dec. 2022. (Photo by Samir Hussein/Redferns)

The tour was scheduled to run in Europe from Aug. 26, 2023, to Apr. 22, 2024. Prior to the COVID-19 pandemic, Dion performed the first 50 shows of her Courage tour in North America.

The decision to cancel the remainder of her tour dates comes with a "sense of tremendous disappointment," according to the release.

What is Stiff Person Syndrome (SPS)?

As per the Stiff Person Syndrome Foundation, the condition affects the central nervous system, specifically the brain and spinal cord.

People with SPS "can be disabled, wheelchair bound or bed-ridden, unable to work and care for themselves." The syndrome is characterized by muscle spasms and rigidity, severe stiffness and pain.

SPS patients also have a heightened sensitivity to stimuli such as noise, touch and emotional distress — which can set off the spasms.

While SPS is a rare disease, more people are affected than reported due to misdiagnoses. Overall, it can take up to seven years to identify.

SPS can often be mistaken for Multiple Sclerosis, Parkinson’s, fibromyalgia, psychosomatic illness, anxiety, phobia and other autoimmune diseases.

How Stiff Person Syndrome (SPS) affects Celine Dion's singing voice

In an Instagram clip, the 55-year-old shared that SPS had affected "every aspect of [her] daily life."

"Sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I'm used to...I have to admit it's been a struggle," she said.

SPS affects the muscles near Dion's vocal cords, which may impact the sounds of her voice.

Dr. Marinos Dalakas, a professor of neurology at Thomas Jefferson University in Philadelphia, told CTV News that several of his patients with SPS have ongoing muscle stiffness.

"When this affects the diaphragm or affects the laryngeal muscles or the vocal cord muscles, the voice becomes very thin, it doesn't come out strong, it is fragmented," he said.

"The singers might get the stiffness more and then because the voice is so important for them the spasms are focussed more there," he told CTVNews.ca.

What are the signs and symptoms of Stiff Person Syndrome?

The typical symptoms of SPS include muscle rigidity, hyper-stiffness and "spasms in muscles of the trunk, including the back and limbs." The tremors' severity is variable from episode to episode.

Moreover, the neurological disease has autoimmune features can also include "debilitating pain, chronic anxiety" and muscle spasms "so violent they can dislocate joints and even break bones."

The typical symptoms of Stiff Person Syndrome include muscle rigidity, hyper-stiffness and pain. (Photo via Getty Images)
The typical symptoms of Stiff Person Syndrome include muscle rigidity, hyper-stiffness and pain. (Photo via Getty Images)

In the early stages of SPS, spasms and stiffness may be subtle and fluctuate on a daily basis. There can be periods when symptoms seem stable, while other times they can be more noticeable and rapid.

At times, the muscle spasms may be brief, lasting minutes. However, they can also last hours or days.

Other key warning signs include changes in posture, increased stress and anxiety, and troubles breathing.

If you or someone you know if experiencing any of the above symptoms, contact your doctor or a medical professional as soon as possible.

Who is at risk of Stiff Person Syndrome?

SPS is extremely rare and affects twice as many women as men. Symptoms can occur at any age but usually develop between ages 30 and 60.

The condition is usually associated with other autoimmune diseases such as vitiligo, diabetes, pernicious anemia and thyroiditis.

As a whole, health professionals are unsure what exactly causes SPS, but some research indicates that it's the result of a faulty autoimmune response in the spinal cord and brain.

How is Stiff Person Syndrome treated?

In-home nurse helping Nurse helping senior woman with physical therapy in her home man walk down hallway
Currently, there is no cure for Stiff Person Syndrome. Treatment focuses on pain relief and symptom management. (Photo via Getty Images)

Currently, there is no cure for SPS. Treatment focuses on pain relief and symptom management associated with muscle spasms, such as physiotherapy, a stretching and strengthening program and massage therapy.

In some patients, immunotherapy and other medications may help to reduce stiffness, pain and specific autoimmune abnormalities. That said, most people with SPS have at least some degree of disability.

If depression and anxiety is present, mental health therapy is encouraged, along with visiting a pain and chronic illness centre for regular check-ups.

Can I prevent Stiff Person Syndrome?

As scientists do not know what causes SPS, there's no surefire way to prevent the condition.

However, it's recommended that you do what you can to look after your mental and physical health through stress management, exercising regularly, getting adequate sleep and eating a healthy diet.

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