What is stiff person syndrome? Celine Dion postponing or canceling shows after rare disorder diagnosis

Celine Dion close up
Celine Dion has postponed and canceled many of her upcoming shows as a result of her Stiff Person Syndrome diagnosis. Pic credit: ©

Singer Celine Dion announced to her fans on December 8, 2022, that she would be canceling and rescheduling most of her Spring and Summer 2023 shows. The decision came after she was diagnosed with the extremely rare neurological disorder, Stiff Person Syndrome.

As the 54-year-old singer explained in the announcement, Stiff Person Syndrome affects only one in a million. The most common symptoms of the disease are rigidity in the muscles in the patient’s torso, arms, and legs.

In addition to this, those diagnosed with Stiff Person Syndrome are more sensitive to sound and noise, which can trigger painful muscle spasms. They may also develop anxiety and be afraid to leave the house because of the possibility of it sparking debilitating muscle spasms.

For the past year, Dion had been forced to cancel and postpone many shows, citing painful muscle spasms as the reason. She confirmed in her announcement that Stiff Person Syndrome was the cause of those spasms.

She also explained that the spasms are so severe that sometimes she has difficulty walking. They can even impact her vocal cords, which is troubling for Dion, given her decades-long singing career.

In the emotional video, she stated, “All I know is singing. It’s what I’ve done all my life and it’s what I love to do the most.”

Celine Dion postponed tour after Stiff Person Syndrome diagnosis

Dion made the announcement on social media via video, posting one in English and one in French. She had previously been hoping to kick off her European tour in February 2023.

However, she tearfully announced its postponement due to her health struggles. She also admitted that it was difficult for her to talk about the serious diagnosis.

Dion also assured her fans that she was receiving treatment for the disease. She stated that she worked with a sports medicine therapist “every day” in hopes of building back her strength and her “ability to perform again.”

She credited her fans’ and children’s support with helping her get through this difficult diagnosis. However, she also admitted that she and her medical team were still learning about the disease.

It is unknown what causes the disease and while treatment can alleviate some of the pain, Stiff Person Syndrome is incurable. The disease is both rare and also frequently misdiagnosed.

Due to being so uncommon, the disease is often mistaken for Parkinson’s, Multiple Sclerosis, Fibromyalgia, and other autoimmune diseases. This may be why it took nearly a year for Dion to receive a diagnosis after first citing issues with muscle spasms in January of this year.

Will Dion be able to perform again?

While she has expressed a desire to sing again, Stiff Person Syndrome will make it very difficult. However, whether she will be able to perform again largely depends on how severe the disorder is for her.

The disorder varies in severity among patients. In some severe cases, the disorder can be disabling and can even render patients wheelchair-bound, however, others find they can manage the syndrome well with the aid of medication.

Rheumatologist Simon Helfgott stated, “This is just such a severe diagnosis to have, especially if you’re an entertainer [on] the world-class type of stage. It’s going to be very, very challenging to be able to continue.”

The problem with Stiff Person Syndrome is that it is difficult to predict if a patient’s condition will worsen or not. Treatment is also difficult as the severity of the symptoms can change minute by minute.

Helfgott explained that while some individuals will go 10 years with little change in their condition, others can experience a slow decline in their health.

Dion seemed determined to sing again, but without knowing the severity of her disease, only time will tell if her desire will become a reality.

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