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What Is Stiff Person Syndrome? Celine Dion's Disorder Explained

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.

Celine Dion 'likely To Never Sing In Public Again' Due To Stiff-person Syndrome Diagnosis

The singer, 55, might never sing again, according to reports. Here's what we know about her stiff-person syndrome diagnosis and how it's affecting her health.

In December 2022, Celine Dion received a diagnosis of stiff-person syndrome - an autoimmune disease that causes muscle stiffness throughout the body. According to reports as told by Mirror, her family is struggling to find a medication that works for her as her condition worsens.

The singer is unfortunately said to be "debilitated" by the condition, and is likely to never sing again in front of fans, as she does not feel like leaving her house due to her symptoms.

Celine Dion's sister reveals that the singer continues to have hope despite no improvement in Stiff-Person Syndrome

According to an inside source reporting to The National Enquirer, Celine is highly susceptible to falling, and has been having "unbearable" muscle spasms in recent months.

""Celine hasn't been photographed in public in almost 600 days — and with good reason," the source said. "She has trouble walking and is at the mercy of loud noises that trigger spasms, which make her susceptible to failing. Her back has become hunched and her muscle spasms are, at times, unbearable."

Unfortunately, the condition has only continued to worsen, said the source, and she has move in with family members, including her sister Linda.

Celine Dion

The singer, who was supposed to go on tour later this year, had to cancel her tour dates for her Courage World Tour. According to the inside source, it is unlikely she will ever get to perform those dates, even if postponed far into the future.

Celine's sister Claudette has also given some updates on her condition. She told Le Journal de Montreal that she often calls her sister to check in, although Linda is often the one answering the phone. "When I call her and she's busy, I speak to my sister Linda who lives with her and tells me that she's working hard," Claudette said.

"I honestly think that she mostly needs to rest. She always goes above and beyond, she always tries to be the best and top of her game," she continued of her sister. "At one point, your heart and your body are trying to tell you something. It's important to listen to it."

Celine Dion

Celine's team continues to occasionally post on her social media - but fans are asking for more updates on her health condition.

On the most recent video posted to her Instagram account, one fan commented, "I would like to get an update about Celine situation? Please somebody update!"

Another said, "I can't wait to see you soon with your bright, energetic smile and your wonderful vigorous voice….. I wish you all the best, Celine!!"

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How Is Celine Dion's Health In 2023? Stiff Person Syndrome And Other Challenges

Earlier this year, Celine Dion announced she was canceling the remaining dates of her Courage World Tour as she dealt with a serious health condition. 

The pop icon, 55, revealed in late 2022 that she had been diagnosed with stiff person syndrome, a rare neurological condition that can cause severe muscle stiffness and spasms.

Dion has been candid with fans about her physical health over the years, opening up about her fertility struggles and shooting down eating disorder rumors.

As Dion takes some time away from the limelight to focus on her physical well being, here is a look at some of the health issues she has spoken about publicly over the years.

How is Celine Dion doing in 2023?

Dion shared an update on her health in May 2023 as she announced the cancelation of her world tour, which had been scheduled to run until October. 

"I'm working really hard to build back my strength, but touring can be very difficult even when you're 100%," she said in a message to fans on her website. "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!" 

This year, Dion also starred as herself in "Love Again," a rom-com also starring Priyanka Chopra and Sam Heughan. 

Dion contributed five new songs to the movie's soundtrack, including the ballad "Love Again."

Will Celine Dion be able to perform again?

It remains to be seen whether Dion will be able to perform again, but she and her team have shared their hopes that she may return to the stage.

When Dion announced the cancelation of her world tour in May, her team said in a statement they "have every hope that someday soon, Celine will be able to come to all of these cities in Europe to perform for her amazing fans."

Dion has also said she is "working hard" to build back her "strength and ability to perform again." 

While every person's situation is different, some people are able to manage the symptoms of stiff person syndrome, Dr. Desimir Mijatovic, a pain medicine specialist with the Cleveland Clinic in Ohio, told TODAY.Com in 2022. 

"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 said. 

Mijatovic is not involved in Dion's care, but he said it is not outside the realm of possibility that Dion could perform once more.

"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 shared she has stiff person syndrome in 2022

Dion revealed in December 2022 that she'd been diagnosed with stiff person syndrome and would be postponing tour dates due to the condition. In May 2023, she canceled her remaining tour and shared that she was still being treated for the disorder. Her health problems had previously forced her to announce tour date cancelations in January 2022 and April 2022.

Stiff person syndrome is a rare neurological disorder. Symptoms of the progressive condition may include stiff muscles in the torso, arms and legs, as well as muscle spasms that may be triggered by noises, touch or emotional distress, 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 postures and may struggle to walk or move. People may also fall more frequently because they lack the muscle reflexes to catch themselves, which can lead to injury.

Dion opened up about 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."

She added that she was working with a sports medicine therapist to rebuild her strength, but admitted it had been "a struggle."

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.

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.

"My luck hasn't been very good lately... I've been so looking forward to doing my shows again and this happens…. I just can't believe it!" Dion said in a message to fans on Facebook.

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. We're on the fifth try. And I tell you, if five is my lucky number, this fifth try has got to come in."

In the end, the singer underwent six rounds of IVF.

"These treatments were truly hard on my wife's body," Angélil told the French-language Le Journal de Montreal, as translated by People. "It wasn't simple at all."

Dion's fertility treatments were eventually successful 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.

"I'm very thin," she added. "I don't even train. I'm lucky."

She also asked people to stop commenting on her weight in a 2019 People interview, addressing online speculation about her physique.

"If I like it, I don't want to talk about it. Don't bother. Don't take a picture," she said. "If you like it, I'll be there. If you don't, leave me alone."

She addressed rumors about her appearance in another People interview earlier that year, 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."

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