Inside Celine Dion’s Health Battle With Stiff Person Syndrome

Celine Dion

Celine Dion is one of the most successful—and talented—singers of the past three decades. Nowadays, however, the “My Heart Will Go On” crooner is making headlines for a different reason, as she's been battling a difficult health diagnosis for some time now.

"What pains me is that she has always been disciplined," Dion's sister recently shared. "She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.’”

Here is everything you need to know about Celine Dion’s struggle with stiff person syndrome.

What's wrong with Celine Dion?

Back in December 2022, while postponing several of her European tour dates, Celine Dion revealed she had been diagnosed with stiff person syndrome, a painful and disruptive neurological disorder.

At the time, she discussed the diagnosis in depth in a video post on her Instagram account, saying in part, “While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I’ve been having.”

She also explained the disorder affects only “something like one in a million people.”

Related: Celine Dion Spotted in Rare Public Appearance Amid Health Battle

What is Celine Dion's illness?

Celine Dion has a neurological disorder known as stiff person syndrome. Dion was diagnosed with the disorder after she experienced persistent spasms, which led to her postponing several anticipated performances on her European tour in December 2022.

Dion announced the postponement with an accompanying explanation about her health status. “I’m so sorry we have to change our tour plans for Europe one more time; first we had to move the shows because of the pandemic, now it’s my health issues causing us to postpone the shows," she said. "I am doing a little bit better…but I’m still experiencing some spasms. I need to be in top shape when I’m on stage. I honestly can’t wait, but I’m just not there yet…I’m doing my very best to get back to the level that I need to be so that I can give 100% at my shows because that’s what you deserve.”

What is stiff person syndrome?

Stiff person syndrome is a rare autoimmune neurological condition that affects the central nervous system, causing painful spasms and muscle rigidity. These symptoms can worsen over time. The disorder is thought to affect one or two people in a million. However, experts now believe it could be a spectrum of disorders, which would likely mean it is more common than was initially believed.

There are different types of stiff person syndrome, such as: classic stiff person syndrome, partial stiff person syndrome and stiff person syndrome plus. These are in addition to other less common types of stiff person syndrome that are included in the spectrum of SPS.

Several tests may be needed to diagnose stiff person syndrome. These may include: blood tests, a review of your medical history, a physical exam, electromyography (also known as an EMG, a test that evaluates the body’s nerve and muscle functions), a lumbar puncture and/or imaging studies. A person may be diagnosed with stiff person syndrome when there is no better explanation for a patient’s symptoms and diagnostic findings.

Related: Doctors Explain the Stiff Person Syndrome

What are stiff person syndrome symptoms?

The symptoms most associated with stiff person syndrome are painful spasms and muscle rigidity. The spasms most commonly start in the back and legs. However, they can also occur in the abdomen, and more rarely, in the upper torso, arms, face and neck.

These spasms can be connected to events—for instance, if someone with SPS is surprised or makes a sudden movement. They can also be triggered by cold temperatures, emotional stress, certain touches or sensations and/or specific exercises.

The contractions caused by SPS typically make the afflicted area stiff and rigid. This can cause a sufferer to have difficulty walking, a general unsteadiness, a rigid posture, chronic pain, shortness of breath, changes in spinal alignment/spinal cord compression as well as psychological issues like anxiety and/or agoraphobia brought on by the physical symptoms. Symptoms that are less common are: eye movement issues that lead to double vision, speech problems, and issues with coordination.

What causes stiff person syndrome?

The exact cause of stiff person syndrome. Experts theorize the symptoms are triggered by an autoimmune reaction in which the immune system attacks a protein called glutamic acid decarboxylase (GAD), which helps make a substance called gamma-aminobutyric acid (GABA).

GABA is a neurotransmitter that reduces or prevents certain nerve signals, and if GABA is unable to function properly, nerve cells can malfunction, too. As is the situation with someone who has SPS, the nervous system becomes overactive and overstimulated. This disruption of normal GABA function is thought to be what causes the symptoms of SPS, however it is not known what triggers this malfunction in the first place.

Is there a cure for stiff person syndrome?

While there are treatments available to help manage stiff person syndrome, at this time, there is no known cure.

When did Celine Dion get her diagnosis?

While it is not known exactly when Celine Dion received her diagnosis of stiff person syndrome, she shared the news with the world in December 2022. Dion’s reveal came in the midst of the singer postponing several performances of the European leg of her “Courage World Tour.”

Unfortunately, months after Dion’s tragic revelation, in May 2023, she canceled the remainder of her tour dates through 2024, indefinitely.

Can Celine Dion still sing with stiff person syndrome?

Dion canceled her tour dates in response to her health struggle, explaining that the symptoms she experiences with SPS do indeed impact her ability to perform. "Unfortunately, these spasms [caused by SPS] 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 said.

Related: Celine Dion Opens Up About Rare Incurable Health Diagnosis

What's the latest Celine Dion health update?

Celine Dion revealed her diagnosis with stiff person syndrome in December 2022 before canceling her upcoming tour dates indefinitely in May 2023. In December 2023, a year after her big reveal, the singer’s sister, Claudette Dion, shared a health update on her sibling's behalf.

Claudette explained that Celine “doesn’t have control of her muscles.” She went on to say, “There are some who have lost hope because it is a disease that is not [very well] known. What pains me is that she has always been disciplined. She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.’”

When it comes to a potential return to live performances, Claudette was honest about those aspirations. “It’s true that, in both our dreams and hers, the goal is to return to the stage. In what capacity? I don’t know. The vocal cords are muscles, and the heart is also a muscle. This is what comes to get me. Because [Dion’s condition is a] one out of a million case, the scientists haven’t done that much research because it didn’t affect that many people.”

How old is Celine Dion now?

Celine Dion was born on March 30, 1968, making her 55 as of this writing. She has been working professionally as a singer since she was 12 years old.

Next, Celine Dion's Sister Shares Troubling Health Update for Singer: 'Breaks My Heart'