'I Am: Celine Dion' documentary to follow singer amid Stiff Person Syndrome diagnosis: What is the condition?

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

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An upcoming documentary titled
An upcoming documentary titled "I Am: Celine Dion" will focus on the singer's life and career amid her diagnosis with Stiff Person Syndrome. (Photo by: Charles Sykes/Bravo/NBCU Photo Bank via Getty Images)

Celine Dion's life and career amid her diagnosis with Stiff Person Syndrome is set to be the focus of an upcoming documentary.

Worldwide rights for the film, titled "I Am: Celine Dion," have officially been given to Amazon MGM, according to The Hollywood Reporter, which noted the movie will stream on Prime Video with a currently-unknown release date.

"This intimate exploration takes viewers on a journey inside Celine's past and present as she reveals her battle with Stiff Person Syndrome (SPS) and the lengths she has gone to continue performing for her beloved and loyal fans," a news release published Tuesday shared. "The documentary captures a global megastar's never-before-seen private life.

"'I Am: Celine Dion' captures more than a year of filming as the legendary singer navigates her journey toward living an open and authentic life amidst illness."

Dion, 55, shared her SPS diagnosis in late 2022. A statement at the time said that the rare condition, which causes severe and persistent muscle spasms, "prevents her from performing."

Dion first shared her Stiff Person Syndrome diagnosis in December 2022. (Photo by Samir Hussein/Redferns)
Dion first shared her Stiff Person Syndrome diagnosis in December 2022. (Photo by Samir Hussein/Redferns)

The illness forced the Quebec-born superstar to cancel the rest of her Courage world tour in the spring of 2023. While the tour was scheduled to run in Europe from Aug. 26, 2023, to Apr. 22, 2024, the singer ultimately decided to cancel the remainder of the shows.

"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 wrote in a May 26, 2023 post on X, formerly known as Twitter.

The Canadian singer's sister, Claudette Dion, told HELLO! Canada that summer that Celine is "doing everything to recover. She's a strong woman."

In December, Claudette follow-up with fans, telling Canada's french-language magazine 7 Jours that Celine "doesn't have control of her muscles." The star's older sister added 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 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.'"

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 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."

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 that 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 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?

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

However, it's recommended 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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