Dion is currently battling a serious neurological condition called stiff person syndrome. Here’s what we know.

Céline Dion is opening up about her health like never before in a new documentary, “I Am: Céline Dion,” available to stream on Prime Video on June 25.

The film follows the iconic singer as she looks back on career highlights and tries to build up her strength to perform again, despite her diagnosis of stiff person syndrome. It’s a rare neurological disorder cause causes severe and painful muscle spasms that affect her ability to walk, sing and more.

An especially shocking scene in the documentary shows her in a full-body spasm so severe that she can’t speak or make even slight movements. But she’s come far with her treatment since that moment and has even shared plans to return to the stage, though she hasn’t revealed specifics about when.

She made her first public appearance since the release of her documentary at the NHL draft June 28, surprising the crowd by announcing the fifth-overall selection.

Since announcing her diagnosis in December 2022, Dion has shared some health updates with fans. But how is Dion doing today? Will she be able to tour again? Here’s what we know about her diagnosis and health struggles.

How is Céline Dion’s health today?

Dion looked strong and healthy at her most recent public outing on June 28. She made a surprise appearance at the NHL draft to announce the Montreal Canadiens’ first pick of the night.

Dion also attended the premiere of her documentary in New York City in mid-June and posed on the red carpet. When speaking to the audience, she shared how glad she was to find herself in front of a crowd for the first time in years.

In her first TV interview since revealing her stiff person syndrome diagnosis, Dion told Hoda that her voice is getting stronger and that she believes she will be healthy enough in the near future to return to the stage — but she didn’t specify exactly when.

“I believe in myself, in my bravery,” she said, adding that she may still need to call off performances from time to time: “I know that I have a good team right now (who will say), ‘No show tonight.’ It’s going to be hard. It will probably happen.”

Still, she will not let her disease “control my life,” she said. “I’m going to come onstage because I’m ready. And my vocal cords will not scare me because I’m going to be ready, and I’m going to hit those notes.”

Dion’s physician, Dr. Amanda Piquet, also told Hoda that Dion has made “significant progress” with her treatment since the documentary was made.

Dion previously told Vogue magazine in May that her “happiness has come back” in recent years since publicly revealing her diagnosis. “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,” she said.

In a Vogue France interview published the prior month, she shared that she’s “(learning) to live with” her illness, adding that she’s been receiving vocal, physical and athletic therapy five days a week.

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 presented the last award of the night and received a standing ovation at the 2024 Grammys. “When I say, I’m happy to be here, I really mean it from my heart,” she said.

Dion also sang behind the scenes at the award ceremony, 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 the 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 at 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 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, though 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.

The director of Dion’s upcoming documentary, Irene Taylro Brodsky, described to Hoda what it was like to witness one of the singer’s medical attacks.

“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,” Brodsky said.

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.

Stiff person syndrome treatment

Dion’s condition is being managed with IVIG, or intravenous immunoglobulin, which helps manage the autoimmune aspects of the condition. She also sees a vocal therapist and physical therapists and takes medication. She told Hoda about relying on high doses of Valium to control her muscle spasms.

Generally, Piquet says treatment for stiff person syndrome usually involves immune treatment, which includes IVIG, and symptom-focused treatment, which includes medication, such as muscle relaxers, and various physical therapies.

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.

“We now know this is what’s been causing all of the spasms that I’ve been having,” she in the emotional video posted on her Instagram page.

“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, Dion told Hoda: “I’m going to go back onstage, even if I have to crawl. Even if I have to talk with my hands, I will … not just because I have to, or because I need to. It’s because I want to and I miss it.”

She did not reveal a specific timeline for performing again and previously opened up to Vogue France about the roller coaster of deciding when she may be ready.

“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,'” she told the magazine.

In the past, the singer and her team have said they expect her to be able to perform again at some point.

On March 15, Dion wrote in the caption of an Instagram post for Stiff Person Syndrome Awareness Day that “I remain determined to one day get back onto the stage and to live as normal of a life as possible.”

In May 2023, Dion stressed that she was trying to regain her strength, and 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 “to the point that their condition is stable (and) they can continue to live fairly mobile (lives),” Mijatovic, who is not involved in Dion’s care, says.

“People like Céline are oftentimes able to overcome a lot of amazing things, and I definitely think it’s something that’s possible,” he adds.