Christian Vierig
- Céline Dion says that the symptoms of her stiff-person syndrome can be easily triggered.
- The "My Heart Will Go On" singer opened up about her condition during an interview with Today's Hoda Kotb.
- Dion also shared that she had been experiencing symptoms even as far back as 2008.
Céline Dion says the symptoms of her stiff-person syndrome can be easily triggered by almost anything, including laughter.
In an interview with Hoda Kotb, that aired on NBC on Tuesday, Dion opened up about the realities of living with the medical condition.
"Anything can trigger me to have something. Too much work, not enough work. If I sit all daylong, I'll be wobbly. Walking wobbly," Dion told Kotb. She said that if she asks her therapist to push her too much, it can cause problems. "I can have a condition and go into a crisis," she said.
The singer elaborated on the other triggers that can cause muscle spasms.
"Happiness, sound, a touch unexpected. So I don't really want to think so much about this, but I have to be aware of it," Dion said.
During a segment of the NBC interview, Irene Taylor Brodsky — the director of her upcoming documentary "I Am: Celine Dion" — joined the duo to talk about her experience witnessing one of Dion's medical attacks firsthand.
"It was very quick. She was giggling, and 5 seconds later, we were in a totally different stratosphere," Taylor said. "She had a cramp in her foot, and I thought, 'That doesn't look right.'"
Within minutes, Dion could not speak because her body muscles stiffened.
"It was the most extraordinary and extraordinarily uncomfortable moment in my life. As a filmmaker, but also as a mother, as a fellow human, because I didn't know what was happening," Brodsky said. "We were this close, and her body was enduring something that was unimaginable, and I wasn't sure if she was aware of it, and I wasn't sure if she was going to survive it."
Dion recovered after her team administered medication, per the interview.
The "My Heart Will Go On" singer first announced that she had been diagnosed with stiff-person syndrome in December 2022.
During the NBC interview, she shared that she had been experiencing symptoms of the condition even as far back as 2008, but chose to power through it so she could continue to tour and perform for her fans.
Stiff-person syndrome is a rare, progressive neurological disorder that can cause symptoms such as muscle stiffness and spasms.
According to the National Institute of Neurological Disorders and Stroke, those with stiff-person syndrome can also experience a greater sensitivity to noise, touch, and emotional distress — all of which can set off muscle spasms.
It is a very rare disease that affects one in a million, according to one estimate, per National Organization for Rare Disorders.
There is no cure for stiff-person syndrome, but there are ways for patients to manage their condition, including through medication and therapy.
In April, Dion told Vogue France that she goes to therapy five days a week and trains "like an athlete" as part of her treatment plan.
"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.
During the NBC interview, the singer also told Kotb that she was determined to return to the stage.
"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 tells Hoda. "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," Dion said.
The NBC interview can be streamed on Peacock.
"I Am: Celine Dion" premieres June 25 on Prime Video.