Céline Dion began noticing Stiff Person Syndrome symptoms 17 years ago. What to know about the rare neurological condition

The 56-year-old singer spoke to Hoda Kotb about living with Stiff Person Syndrome, a rare and painful neurological disorder.

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PARIS, FRANCE - JULY 03: Celine Dion attends the Valentino Haute Couture Fall/Winter 2019 2020 show as part of Paris Fashion Week on July 03, 2019 in Paris, France. (Photo by Pascal Le Segretain/Getty Images)
Dion shared new details of life with Stiff Person Syndrome in a new interview with Hoda Kotb. (Photo by Pascal Le Segretain/Getty Images)

Céline Dion is sharing new details about her "very difficult" journey with Stiff Person Syndrome (SPS). In an new interview with TODAY, the 56-year-old mother-of-three told Hoda Kotb she first began experiencing symptoms 17 years ago.

"I could say that it's like a little cold starting, or just because I pushed too much. It's the third show in a row, you're working too hard," Dion said. "But the thing is that it was different. I started to feel that the body was like, getting more rigid."

Dion said she noticed her voice becoming more nasal during her “Taking Chances” world tour that ran from 2008-2009. Dion’s team lowered the key of her songs to compensate for the voice changes.

The “Drove All Night” singer admitted that caring for her husband, Renée Angélil, who was battling throat cancer and caring for her three sons was a distraction from her worsening symptoms.

LOS ANGELES, CA - DECEMBER 03:  Singer Celine Dion on stage during The GRAMMY Nominations Concert Live!! held at the Nokia Theatre on December 3, 2008 in Los Angeles, California.  (Photo by John Shearer/WireImage)
Dion (pictured in 2008) began noticing symptoms of SPS that impacted her voice during her "Taking Chances" world tour. (Photo by John Shearer/WireImage)

“My husband as well was fighting for his own life. I had to raise my kids, I had to hide. I had to try to be a hero,” she said, admitting that she “should have stopped” to take care of her own health.

Before she was diagnosed with SPS, Dion was prescribed Valium to help manage her symptoms. The star said she began taking higher doses of the drug in order to perform and developed a high tolerance.

“90 milligrams of Valium can kill you. You can stop breathing at one point. The thing is that my body got used to it at 20 (milligrams) and 30 and 40, until it went up. And I needed that. It was relaxing my whole body for what, for two weeks, for a month. OK, the show must go on," she said, adding “I did not know, honestly, that it could kill me.”

Although she kept her health struggles private, she decided to go public with her health news after receiving a formal diagnosis of SPS.

“Feeling my body leaving me, holding on to my own dreams… I could not do this anymore,” she told Kotb. “Lying for me, the burden was too much. Lying to the people who got me where I am today, I could not do it anymore.”

MACY'S THANKSGIVING DAY PARADE --  Pictured: (l-r) Celine Dion rehearses for the 2019 Macy's Thanksgiving Day Parade -- (Photo by: Virginia Sherwood/NBC/NBCU Photo Bank via Getty Images)
Dion was forced to cancel her upcoming tour dates in 2023. (Photo by: Virginia Sherwood/NBC/NBCU Photo Bank via Getty Images)

SPS has impacted every aspect of Dion’s life. In addition to feeling as though “somebody is strangling you,” SPS has caused her to have “broken ribs” from severe muscle spams.

"It started here," Dion said, pointing to her throat. "OK, it's going to be fine. Then you have a hard time to walk and then you're blind for two hours, and you're like, what happened? Am I missing something? Did I have a drop in sugar or something? You think of the simple things, not thinking you're going to die."

Dion's health journey is detailed in her new documentary, "I Am: Céline Dion." Although Dion was forced to cancel all booked tour dates in 2023, she told Kotb she hopes to return to the stage one day.

"I’m going to go back onstage, even if I have to crawl. Even if I have to talk with my hands. I will. I will," she said. "I am Céline Dion, because today my voice will be heard for the first time, not just because I have to, or because I need to. It’s because I want to. And I miss it."

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.

Dion first noticed her voice becoming more nasal 17 years ago. (Image via Getty Images)
Dion first noticed her voice becoming more nasal 17 years ago. (Image via Getty Images)

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.

In an Instagram clip, the singer shared 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 last year 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."

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)

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 that can also include "debilitating pain, chronic anxiety" and muscle spasms "so violent they can dislocate joints and even break bones."

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.

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 it's the result of a faulty autoimmune response in the spinal cord and brain.

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.

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