Celine Dion: how her story inspires other stiff person syndrome sufferers

A new W5 documentary, “Céline’s Silence,” digs into the rare disorder that has put Celine Dion’s career on hold, while hearing from her long-time collaborators, friends and family.

For decades, Céline Dion has captured the hearts of Canadians with her powerful voice. The singer has been out of the spotlight ever since announcing she has been diagnosed with stiff person syndrome, a rare neurological disorder that causes muscle stiffness and painful spasms.

“Everyone has cramps in their calves or arms from time to time after exercising…[but] these are more painful spasms that occur in uncommon areas of the body,” Dr. Rami Massie, a neurologist with the Montreal Neurological Institute-Hospital, told CTV W5. “They are spasms that incapacitate people and prevent them from doing anything.” 

Dion announced her diagnosis in December of 2022, in an emotional Instagram post, sharing “we still don’t know everything about this rare disorder…these spasms affect my daily life on multiple levels.”

Dion announced her diagnosis in December of 2022, in an emotional Instagram post, saying, “we still don’t know everything about this rare disorder…these spasms affect my daily life on multiple levels” (Instagram)

Stiff person syndrome occurs when the body’s antibodies attack enzymes in the central nervous system that work to control muscle movement. Only one or two people per million are afflicted with the disorder, and it affects women more than men.

Lynda Carrière, a 50-year-old Canadian woman, knows first-hand what it’s like to live with this distressing illness. Once an avid athlete with a passion for marathons, triathlons and scuba diving, she claims it’s taken over her life.

“Everything becomes stressful. When I leave my home and I hear abrupt sounds or a friend calling out to me, it becomes a stressful moment and I may fall down. You become rigid in an instant,” she said.

Lynda Carrière, a 50-year-old Canadian woman, knows first-hand what it’s like to live with this distressing illness. Once an avid athlete with a passion for marathons, triathlons and scuba diving, she tells CTV W5 it’s taken over her life (W5)

Carrière finds comfort and strength in Dion’s brave battle, knowing their journey with the illness is so similar. In the new W5 documentary, “Céline’s Silence,” Carrière wipes away tears as she re-watches Dion’s announcement about her health.

“She explains the disorder very well. You live a very isolated life. But what helps us the most are the people that know about our illness and still keep in touch to encourage us. That really helps a lot. We feel less isolated. Maybe this disorder will now be more well-known, which is a good thing,” said Carrière.

For many of Céline’s collaborators and admirers, her absence has served to highlight the singer’s sharp rise to the top, especially in Las Vegas, where she held a residency in the prime of her career. According to Cara Clarke, Vice President of Communications with the Las Vegas Chamber of Commerce, she brought in nearly US$700 million in gross revenue, and US$2.5 million in ticket sales over the course of 1,200 shows.

“She provided the rocket fuel for this city at a really important time, when our economy had crashed,” said Norm Clarke, a former columnist with the Las Vegas Review-Journal.

Former Las Vegas columnist Norm Clarke says Dion provided “rocket fuel” for the city when the economy had crashed (W5)

Beyond her residencies and shows, Céline was a member of the Vegas community. She gave back to and had a home in the city and raised her kids there. Her impact was nothing less than revolutionary and immense, as she paved the way for other female pop stars to obtain work-life balance: Katy Perry, Britney Spears, Jennifer Lopez and Adele all held residencies in Vegas following Céline.

“There’s no question that Céline made Las Vegas cool again. She had a tremendous impact. Las Vegas is a much different town, a much better town as a result of the impact she made on it,” said Clarke.

“There’s just no question Céline’s presence is missed here, but her spirit is still around… I hope that Celine can pull off one of the great miracles in overcoming this disease because Las Vegas would really love to have her back.”

The W5/Noovo one-hour documentary reveals testimonies from medical experts on stiff person syndrome. Dion’s close friends and early collaborators share their wishes and fears about her heartbreaking health crisis.

Watch CTV W5’s documentary, “Céline’s Silence,” Saturday at 7 p.m. on CTV