Céline Dion is opening up about her health in a new documentary.
The trailer for “I Am: Celine Dion,” which dropped on May 23, gives a rare glimpse into the singer's life with stiff person syndrome, a rare neurological disorder that has prevented her from performing over the last few years.
In the trailer, Dion reveals the impact the condition has had on her. “I have been diagnosed with a very rare neurological disorder, and I wasn’t ready to say anything before, but I’m ready now," she says.
The singer will share even more details about her health ahead of the documentary's release in an exclusive primetime special with TODAY's Hoda Kotb, airing June 11 at 10 p.m. ET, her first broadcast interview since revealing her diagnosis.
The iconic singer first shared that she was diagnosed with stiff person syndrome in December 2022. The rare neurological disorder can cause stiffness and muscle spasms, and affect a person's ability to move and even sing.
The full documentary will give fans a close-up look at her journey to perform again despite her illness and is slated to premiere June 25.
Dion has shared some updates with fans about her health over the past year and a half. How is Dion's health today? Will she be able to tour again? Here's what we know about her diagnosis and previous health struggles.
How is Celine Dion's health today?
Dion shared an update on how she's doing in a recent Vogue interview tied to the release of the trailer for her documentary, "I Am: Céline Dion."
Speaking to the magazine, she revealed that "my happiness has come back" since sharing her stiff person syndrome diagnosis publicly. "It has been a big burden on my shoulders, and a lot of that weight’s gone ... because now I can just focus on reality. That’s wonderful."
In a Vogue France interview the previous month, she shared that she's "(learning) to live with" her illness, adding she's been receiving vocal, physical and athletic therapy five days a week.
“I work on my toes, my knees, my calves, my fingers, my singing, my voice,” she said. “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."
“I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again!”
On March 15, Dion shared a photo with her three sons to mark International Stiff Person Syndrome Awareness Day. She wrote in the caption: “Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible.”
Earlier in March, the pop icon was photographed in New York City and appeared to be doing well as she smiled at the camera and gave a thumbs-up, E! News reported.
In February, Dion took the stage at the 2024 Grammy Awards to present the last and most prestigious award of the night, album of the year. She surprised the audience when she appeared and was escorted to the microphone to give a moving speech about the power of music.
“Thank you all, I love you right back,” she said as she received a standing ovation. “When I say, I’m happy to be here, I really mean it from my heart.”
Dion also sang behind the scenes at the event, harmonizing with singer Sonyae Elise in a video on Instagram. Dion was all smiles as she performed, even if it wasn't on the main stage.
When first announcing her documentary in January 2024, Dion's team shared a short update on her health, writing that the singer is "on the road to resuming her performing career."
“This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me,” Dion said in the release.
What is stiff person syndrome?
Stiff person syndrome is a progressive, neurological disorder with features of an autoimmune disease. It causes muscle stiffness in a person’s torso and limbs, and a heightened sensitivity to noise, touch and emotional stress, which can set off painful muscle spasms, according to the National Institute of Neurological Disorders and Stroke.
The condition can have a severe effect on quality of life. People with stiff person syndrome may develop hunched posture and struggle to walk or move. They may also fall more frequently because they lack the muscle reflexes to catch themselves, which can lead to injury.
Stiff person syndrome is rare, affecting only one or two people in a million, according to Johns Hopkins Medicine. It affects twice as many women as men, according to the National Institutes of Health.
It’s a “very serious condition,” Dr. Desimir Mijatovic, a pain medicine specialist with the Cleveland Clinic in Ohio, tells TODAY.com. “People can have difficulty with movement and difficulty with living their lives.”
Speaking about Dion specifically, he notes there are many muscles involved with singing, especially when a singer performs in front of a huge audience. “Those muscles are prone to spasm or tightening up, and I’m sure it can affect the way that she sings and performs,” Mijatovic says. “If those muscles aren’t working properly, that can make it very difficult.”
Dr. Scott Newsome, director of the Stiff Person Syndrome Center at Johns Hopkins Medicine, called it “a devastating disease” in a video explaining the disorder.
“It’s quite painful, so people will go around with these chronic pain syndromes, go from one doctor to another trying to figure out what’s causing these really bad spasm pain syndromes. Sometimes they get labeled crazy.”
Because stiff person syndrome is so rare and can mimic other conditions, it takes about seven years on average for people to get diagnosed, Newsome added.
There is no cure for stiff person syndrome, although symptoms may be kept under control with certain drugs, as well as physical, occupational and aqua therapy, according to Yale Medicine.
Stiff person syndrome symptoms
Patients may initially feel an aching discomfort, stiffness or pain, especially in the lower back or legs, but also in the shoulders, neck, and hips, according to the National Organization for Rare Disorders.
With time, the leg muscles stiffen, with one leg often more affected than the other, leading to a stiff walking gait and a hunched over posture, it noted.
Patients also develop muscle spasms, which can be triggered by common sounds, such as a car honking, “causing people to freeze like a statue and fall,” according to the Stiff Person Syndrome Research Foundation.
“Just walking down the street, they could have a spasm and fall,” Newsome said.
Not being able to get regular sleep, loud noises and stressful situations can worsen the symptoms, Mijatovic notes.
What causes stiff person syndrome?
The exact cause is still a mystery, but it appears to be an autoimmune response gone awry in the brain and spinal cord, according to the NIH.
The disorder is frequently associated with other autoimmune diseases, such as diabetes, thyroiditis, vitiligo and pernicious anemia, the NIH added.
Celine Dion’s stiff person syndrome diagnosis
In December 2022, Dion revealed she’d been diagnosed with stiff person syndrome and would be postponing tour dates due to the condition. Five months later, in May 2023, she canceled all remaining tour dates.
However, the singer had been struggling with stiff person syndromes for years before receiving her diagnosis.
In 2008, during the Taking Chances World Tour, “Quite rapidly, I was having difficulty controlling my voice,” Dion said in the Vogue interview. “It would go really high, and then it would spasm. So the first thing you do as a singer? Well, you go straight to the ENT.”
Doctors said her vocal chords were “pristine,” she recalled. Eventually, she also started experiencing muscle spasms, balance issues and trouble walking. But it wasn’t until the pandemic that she finally took time to seek answers.
“It probably sounds very strange to say this to you, but when I was diagnosed, I was happy. I was finally able to move with the wave, not against it,” she recalled.
Dion got emotional when first sharing her stiff person syndrome diagnosis in a video posted on her Instagram page in December 2022.
“We now know this is what’s been causing all of the spasms that I’ve been having,” she said. “Unfortunately, these spasms affect every aspect of my 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’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again, but I have to admit it’s been a struggle,” she continued. “All I know is singing. It’s what I’ve done all my life, and it’s what I love to do the most."
Will Celine Dion be able to perform again?
When asked about performing again during the Vogue France interview, Dion said, “I can’t answer that. … Because for four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready. ... As things stand, I can’t stand here and say to you: ‘Yes, in four months.’”
“But there’s one thing that will never stop, and that’s the will," she continued. "It’s the passion. It’s the dream. It’s the determination.”
The January 2024 press release for her documentary noted that her "road" to resume performing is continuing. And in the past, the singer and her team have said they expect her to be able to perform again at some point.
For example, in May 2023, Dion stressed that she was trying to regain her strength with the goal of hitting the stage. At the time, her team also said they “have every hope that someday soon” she’ll be able to tour in Europe.
While every person’s situation is different, some people are able to manage the symptoms of stiff person syndrome, Mijatovic said.
“A lot of people are able to make recovery to the point that their condition is stable. They’re not worsening anymore. They can continue to live fairly mobile (lives),” he explained.
Mijatovic is not involved in Dion’s care, but he said it is not outside the realm of possibility that Dion could perform again. “People like Celine are oftentimes able to overcome a lot of amazing things, and I definitely think it’s something that’s possible,” he said.
Celine Dion's other health struggles
She had to cancel performances for ear surgery
In 2018, Dion had to cancel nearly a month of shows at her Las Vegas residency to undergo ear surgery.
The singer was dealing with a condition called Patulous Eustachian tube dysfunction, which occurs when the tube that connects the middle ear to the sinus cavity remains open, according to Johns Hopkins Medicine.
The condition was causing Dion to have “hearing irregularities and making it “extremely difficult to sing,” her team explained in a Facebook statement at the time.
Dion’s team said the singer planned to undergo minimally invasive surgery to correct the problem.
She had fertility challenges and did IVF
Dion underwent in vitro fertilization (IVF) before she and her late husband, René Angélil, welcomed their first son, René-Charles, in 2001.
She also opened up about her fertility issues as she and Angélil tried for a second baby.
“We didn’t want to feel like we were playing yo-yo. ‘I’m pregnant. I’m not pregnant. I’m pregnant. I’m not pregnant,’” Dion told Oprah Winfrey in 2010. “So, we didn’t want to do this thing. But we did (have) a miscarriage. We tried four times to have a child. We’re still trying."
The singer underwent six rounds of IVF, and in October 2010, she gave birth to twin boys, Nelson and Eddy.
She has addressed speculation about her weight
Dion has long pushed back against speculation that she has an eating disorder. “I don’t have an eating problem, and there’s nothing more I can say about it,” she told People in 1999.
She also addressed rumors about her appearance in a People interview in 2019, saying she had lost some weight due to her intensive ballet practice routine.
“I do this four times a week,” Dion said. “People say, ‘She’s a lot thinner,’ but I’m working hard. I like to move, and (weight loss) comes with it.”
