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World-renowned singer Celine Dion shared a vulnerable moment of her experience with stiff-person syndrome in a raw scene in the new documentary “I Am: Celine Dion.”
“Every time something like this happens, it makes you feel so embarrassed … to not have control of yourself,” Dion says in the film,
The film, released Tuesday on Prime Video, shows Dion, 56, suffering a severe spasm during a physical therapy session. Lying on a table on her side, Dion freezes and starts to cry as she shakes slightly and whimpers in pain.
Dion revealed in December 2022 that she had been diagnosed with the rare neurological disease, which can cause painful spasms and difficulty walking. In the documentary, viewers see her going through one of those hard moments.
The footage shows a physical therapist talking Dion through the spasm and asking her to squeeze his hand if she is in pain. He gives her a nasal spray after having noted that she is breathing abnormally. He and others in the room discuss whether to call 911 if another spasm were to start, but Dion weakly reassures them, saying, “I’m OK.”
It was a candid moment for Dion — one she insisted on keeping in the film. When Dion was shown a rough cut six months after the spasm, she told director Irene Taylor, “Don’t cut down that scene,” Taylor told the Los Angeles Times.
In the documentary, Dion revealed she has been living with symptoms of the condition for 17 years.
Stiff-person syndrome is an autoimmune and neurological condition that affects roughly 1 or 2 out of every 1 million people.
Symptoms include stiffening in the torso and limbs, along with severe muscle spasm episodes. The spasms can occur at random or be triggered by certain stimuli, including loud noises, touch or emotional distress.
Dr. Jennifer Hankenson, a doctor at Yale Medicine who sees patients with stiff-person syndrome, said people with the condition have low amounts of a chemical in the brain called GABA, which plays a role in controlling anxiety and emotional responses, as well as muscle movement.
With low amounts of GABA, a spasm can occur that makes the muscles very tense, she said. Such spasms can start in a particular muscle and then spread throughout the body.
“So when a patient gets very excited, very stressed-out, there’s a loud noise or banging around them, it can be a very small trigger, but it may bring on one of those episodes where unfortunately everything starts to spasm,” Hankenson said. “And when it happens, it can be incredibly painful for the patient.”
Spasms can last several seconds or minutes, or they can be prolonged, she added.
There’s no cure for stiff-person syndrome. Doctors focus on relieving symptoms using medications such as sedatives, muscle relaxants and steroids. Immunotherapies, like infusions of immunoglobulin, have also been shown to reduce people’s stiffness and sensitivity to noise, touch and stress.
Physical and aqua therapies can help patients, as well.
