Learn more about the syndrome without cure that suffers Celine Dion 1:10

(CNN) -- Stiff person syndrome (SPS) is a rare neurological condition that can take years to diagnose and tailor treatment.

Singer Celine Dion announced in December 2022 in an Instagram video the cancellation of some performances because she was diagnosed with this condition. Months later, in May 2023, the singer completely canceled her "Courage World Tour" due to health complications.

"I'm so sorry to disappoint you all once again," reads an announcement on the singer's social media. I'm working really hard to regain my strength, but touring can be very difficult even when you're 100%. " Dion said in canceling her 2023-2024 tour.

  • Celine Dion reveals she has "locked-in syndrome," a rare neurological condition

What is stiff-person syndrome?

Stiff person syndrome is characterized by muscle stiffness and spasms, increased sensitivity to stimuli such as sound and lights, and emotional distress that can cause muscle spasms, according to the National Institute of Neurological Disorders and Stroke.

"It is frequently associated with muscle spasms, which can be quite severe. These can cause falls, severe pain and significant disability," said Dr. Emile Sami Moukheiber of the Stiff Person Syndrome Center at Johns Hopkins Medicine. "Falls from severe spasms are very common. These spasms can be precipitated by startles, severe emotions, cold weather."

advertising

These spasms can be strong enough to fracture a bone and any fall can lead to serious injuries.

Dion said in a video that the spasms affect "every aspect" of her 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."

Symptoms of the syndrome can also cause anxiety.

"Many, if not all, patients have an anxiety that is intrinsic to the disease and that anxiety actually feeds off the physical ailments of the disease that people may have," Dr. Scott Newsome, director of the Stiff Person Syndrome Center, said in a video on the organization's website.

Who is affected by the rigid person syndrome?

Justin Bieber explains the medical condition he suffers from 1:18

The condition affects about a million people and most general neurologists will see only one or two cases in their lifetime, Moukheiber said.

The first case of rigid person syndrome was reported in the 1950s, according to Newsome, and the disease was historically referred to as "rigid man syndrome."

Since then, it has been found to affect twice as many women as men and the name was changed to rigid person syndrome to avoid confusion.

What causes stiffness syndrome?

Stiff person syndrome is thought to have characteristics of an autoimmune disease, according to the National Institute of Neurological Disorders and Stroke.

Although the exact cause is unclear, according to the institute, "people with SPS have elevated levels of GAD, an antibody that acts against an enzyme involved in the synthesis of an important neurotransmitter in the brain."

Because of the rarity of the disease and the ambiguity of its symptoms, people often seek care for chronic pain before receiving neurological care. On average, it takes about seven years for someone to receive a diagnosis of stiff-person syndrome, Newsome says.

"Sometimes [patients] are labeled crazy," he said, "because on initial examination, there are no hallmarks of locked-in person syndrome."

How is stiff-person syndrome treated?

There is no known cure for stiff-person syndrome, but medications can relieve symptoms. Immunoglobulin medications can help reduce sensitivity to light or sound triggers, which could help prevent falls or spasms.

Analgesics, anxiolytics and muscle relaxants can be part of the treatment of this disease. The Stiff Person Syndrome Center also uses botulinum toxin injections.

"If left untreated, the disease can cause severe impairment of daily life," Moukheiber said.

But with treatment, symptoms can be controlled.

Dion, who said she has struggled with her health for a while, said she has a great team of medical professionals and the support of her children.

"I am working hard with my sports medicine therapist every day to regain my strength and my ability to perform again," she said. "But I have to admit it's been a struggle."

For an artist like Dion, loud noises and bright lights can trigger muscle spasms.

"This is a very challenging disease that could affect it if not treated aggressively, timely and appropriately," Moukheiber said.

Editor's note: This article was first published in December 2022 and updated in May 2023.

Celine DionInstaNews