Celine Dion's stiff person syndrome diagnosis led her to cancel the remaining dates of her world tour, but in the singer's most recent message to fans, she said she's still hopeful she'll be able to perform again.
In May 2023, she shared that she’d have to cancel all remaining dates on her world tour. A statement noted at the time that her medical condition, stiff person syndrome, was preventing her from performing.
Dion first revealed her stiff person syndrome diagnosis in an emotional video in December 2022. It's a rare neurological disorder that progresses over time and causes stiff muscles in the torso, arms and legs, as well as muscle spasms often in response to noise, physical touch and stress.
She’d previously canceled tour dates in January and April of 2022 and postponed some dates in December of 2022.
In her May 2023 statement, the Grammy winner said: “I’m so sorry to disappoint all of you once again. I’m working really hard to build back my strength, but touring can be very difficult even when you’re 100%. It’s not fair to you to keep postponing the shows, and even though it breaks my heart, it’s best that we cancel everything now until I’m really ready to be back on stage again. I want you all to know, I’m not giving up… and I can’t wait to see you again!”
Her initial announcement about her condition in December 2022 explained how the muscle spasms "affect every aspect of my daily life." She noted that she sometimes has difficulty walking and is not able to "use my vocal cords to sing the way I'm used to."
She added that she'd been working with a sports medicine therapist with the hope of "building back my strength and my ability to perform again. ... It's been a struggle." But Dion ended on a hopeful note for fans: "I really hope I can see you again real soon."
Here's what we know about stiff person syndrome and the likelihood Dion will perform again, according to doctors who treat the condition.
What is stiff person syndrome?
Researchers call it a 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.
Stiff person syndrome is very rare, with only one or two people in a million affected, Johns Hopkins Medicine in Baltimore, Maryland, noted. It affects twice as many women as men, according to the National Institutes of Health.
It’s a "very serious condition," says Dr. Desimir Mijatovic, a pain medicine specialist with the Cleveland Clinic in Ohio.
“People can have difficulty with movement and difficulty with living their lives,” Mijatovic tells TODAY.com.
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.
What are the 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.
"I often can’t move because the pain and muscle stiffness is overwhelming," Jane Lees, who has stiff person syndrome and lives in Indianapolis, previously told TODAY.com.
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.
How is the disorder diagnosed and treated?
Since the symptoms mimic other conditions, it can be difficult to diagnose. People with the syndrome have elevated levels of certain antibodies in their blood, so a definitive diagnosis can be made with a blood test that measures those levels, the NIH noted.
There’s no cure, but intravenous immunoglobulin treatment, medications to control muscle spasms, anticonvulsants and other drugs can help, according to the NIH. Physical, occupational and aqua therapy is also an important part of the treatment, according to Yale Medicine.
Patients potentially have to take medications on a regular basis to manage the life-disrupting symptoms, Mijatovic says.
“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 notes, adding that it’s possible Dion can recover to the point where she may 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, and it’s something that I’m sure a lot of people look forward to.”
TODAY's Maura Hohman contributed to this report.
