What Is Stiff-Person Syndrome, the Illness Afflicting Celine Dion?

FRIDAY, Dec. 9, 2022 (HealthDay News) -- Stiff-person syndrome: Superstar singer Celine Dion announced Thursday that she is living with this rare neurological condition and has canceled and postponed tour dates to deal with her health issues.

"Recently, I've been diagnosed with a very rare neurological disorder called the stiff-person syndrome, which affects something like one in a million people," Dion, 54, said on Instagram. "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. 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."

Yale University has a team of physicians that treat stiff-person syndrome at its Movement Disorders Clinic. According to information provided by the clinic, the illness is very rare, and its exact cause remains a mystery.

Experts speculate that stiff-person syndrome is an autoimmune disorder: The body's immune system mistakenly attacks cells in the central nervous system that are responsible for moving muscle.

The condition usually develops between the ages of 30 and 60, and symptoms can vary from patient to patient.

"People with Stiff Person Syndrome can run the spectrum from mild to severe, and a personalized approach to treating the disease is the best way to ensure an improved outcome," Dr. Richard Nowak, a neurologist at Yale Medicine, said on Yale's website.

For some patients, the illness can lead to real disability. The muscles of the torso and limbs can become rigid or spasm, often in response to external stimuli such as stress or loud noise, the Yale team explained. This can get so bad as to cause trouble walking, even triggering falls.

There's an emotional component to the disease, also: Because it leads to a decline in the neurotransmitter GABA, which helps regulate anxiety, people with stiff-person syndrome can suffer from new-onset depression and anxiety, the experts explained. The added stress of dealing with the disease adds to the psychological burden.

Because it is so rare, reaching a diagnosis of stiff-person syndrome can be a long process.

"A comprehensive medical history and examination, along with additional investigations, including blood tests and spinal fluid analysis [looking for GABA levels], can confirm the diagnosis," the Yale experts said. Other potential diagnoses -- Parkinson's disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia -- must also be ruled out.

Unfortunately, the illness has no cure, although medicines such as sedatives, muscle relaxants and steroids may help relieve spasms, rigidity and other symptoms. Physical, occupational and aqua therapy might also work. The Yale specialists can also treat patients with immune-focused therapies.

Dion has been hit hard by the illness, she said.

"As you know, I've always been an open book and I wasn't ready to say anything before, but I'm ready now. I've been dealing with problems with my health for a long time and it's been really difficult for me to face these challenges and to talk about everything that I’ve been going through," she said.

"It hurts me to tell you today that this means I won't be ready to restart my tour in Europe in February," Dion said in the emotional video. "I have a great team of doctors working alongside me to help me get better and my precious children, who are supporting me and giving me hope."

Dion also talked of her efforts to restore her health.

"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," she said. "All I know is singing. It's what I’ve done all my life and it's what I love to do the most."

"I miss you so much. I miss seeing all of you, being on the stage performing for you. I always give a hundred percent when I do my shows, but my condition is not allowing me to give you that right now," she said.

Currently Dion's plan for her rescheduled European tour starts with a March 6, 2024, concert in Prague and concludes April 22, 2024, in London, NBC News reported.

More information

The U.S. National Institutes of Health has more on stiff-person syndrome.

SOURCES: Yale Medicine; Celine Dion Instagram; NBC News