What is stiff person syndrome, the disease forcing Celine Dion to cancel some of her shows?

11:56 am on 10 December 2022
Celine Dion

Celine Dion has been diagnosed with a rare neurological condition, stiff person syndrome. Photo: Yoshika Horita/supplied

Celine Dion has cancelled some of her upcoming Courage tour dates after revealing she has a rare illness called stiff person syndrome (SPS).

The 54-year-old Canadian rescheduled some of her concerts from 2023 to 2024, but she cancelled her shows in the first half of next year.

Dion made the announcement in a teary video on her social media accounts, explaining that SPS meant she couldn't perform at 100 per cent of her ability.

What is stiff person syndrome?

It's a rare neurological disease that can have symptoms including muscle spasms, muscle rigidity, chronic pain and heightened anxiety.

"Muscle spasms can be so violent they can dislocate joints and even break bones," the Stiff Person Syndrome Research Foundation says.

"Patients can be disabled, wheelchair bound or bedridden, unable to work and care for themselves."

Some patients develop a hunched posture and overall mobility can be impacted.

While the muscle stiffness affects patients' limbs differently, some people can develop an unsteady gait and have so much difficulty walking they require a walker or wheelchair.

Some people with SPS experience breathing difficulties, but that's a less common symptom.

Patients may develop a greater sensitivity to noise, touch and emotional distress, which can trigger spasms, the US National Institute of Neurological Disorders and Stroke (NINDS) says.

"People with SPS may be afraid to leave the house because street noises, such as the sound of a car horn, can trigger spasms and falls," the institute says.

Patients can lose their normal reflexes to catch themselves from falling, which can cause serious injuries.

Dion says she's been having muscle spasms that "affect every aspect of 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 says.

What causes stiff person syndrome?

It's unclear.

"Scientists don't yet understand what causes SPS, but research indicates it is the result of an autoimmune response gone awry in the brain and spinal cord," the NINDS says.

How rare is it?

It affects at least one to two people in every million, the Stiff Person Syndrome Research Foundation says.

It's more common in women than men.

How long does it take to get diagnosed?

An average of five to seven years, the Stiff Person Syndrome Research Foundation says.

"SPS is often misdiagnosed as Parkinson's disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia," the NINDS says.

"A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase antibodies."

In her Instagram post, Dion said she'd only been diagnosed recently.

In October last year a statement announcing delays to her Las Vegas shows said Dion had "unforeseen medical symptoms".

"Celine has been experiencing severe and persistent muscle spasms which are preventing her from performing. Her medical team continues to evaluate and treat her," the statement said.

In January, she cancelled the remaining shows in the North American leg of her tour, with a statement saying she was still recovering from a "recent health issue".

"I was really hoping that I'd be good to go by now, but I suppose I just have to be more patient and follow the regimen that my doctors are prescribing," she said in a statement.

Then in April, Dion rescheduled the European leg of the tour.

"Celine had completed the first 52 shows on the tour before the pandemic emerged in March 2020, but recently has been treated for severe and persistent muscle spasms which are preventing her from performing, and her recovery is taking longer than she hoped," a statement said.

"Her medical team continues to evaluate and treat the condition."

Is there a cure?


But there are treatments that can help to manage the symptoms.

"With appropriate treatment, SPS symptoms may be kept under control," the NINDS says.

Some of the treatments include muscle-relaxant medications, anti-seizure medication and immunotherapy.

Stiff Person Syndrome Research Foundation says things like yoga, massage therapy, acupuncture and heat therapy may also help manage muscle spasms and pain.

Dion says she's "doing everything I can to recuperate".

"I have a great team of doctors working alongside me to help me get better.

"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."