How Celine Dion By Sharing Her Story Inspires Other People Suffering From Stiff Person Syndrome

A new W5 documentary, “Céline’s Silence,” delves into the rare disorder that has put Celine Dion’s career on hold, while hearing from her longtime 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 since she announced that she had been diagnosed with stiff person syndrome, a rare neurological disorder that causes muscle stiffness and painful spasms.

“Everyone gets cramps in their calves or arms from time to time after exercising…[but] “These are more painful spasms that occur in unusual areas of the body,” Dr. Rami Massie, a neurologist at 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 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 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 the central nervous system enzymes that work to control muscle movement. Only one or two people per million suffer from this disorder and it affects women more than men.

Lynda Carrière, a 50-year-old Canadian woman, knows firsthand what it is like to live with this distressing disease. She was once an avid athlete with a passion for marathons, triathlons and scuba diving, and she claims it has taken over her life.

“Everything becomes stressful. When I leave my house and hear sudden sounds or a friend calling me, it becomes a stressful moment and I can fall. You go stiff in an instant,” he said.

Lynda Carrière, a 50-year-old Canadian woman, knows firsthand what it is like to live with this distressing disease. She was once an avid athlete with a passion for marathons, triathlons and scuba diving, and she tells CTV W5 that it has taken over her life (W5).

Carrière finds comfort and strength in Dion’s brave battle, knowing that her journey with the disease is very similar. In the new W5 documentary, “Céline’s Silence,” Carrière wipes away tears as she rewatches Dion’s announcement about her health.

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

For many of Céline’s collaborators and admirers, her absence has served to highlight the singer’s strong rise to the top, especially in Las Vegas, where she held a residency at the height of her career. According to Cara Clarke, vice president of Communications for the Las Vegas Chamber of Commerce, she generated nearly $700 million in gross revenue and $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 collapsed,” said Norm Clarke, a former Las Vegas Review-Journal columnist.

Former Las Vegas columnist Norm Clarke says Dion provided “rocket fuel” to city when economy tanked (W5)

Beyond her residencies and shows, Céline was a member of the Las Vegas community. She gave back and had a house in the city and raised her children there. Her impact was nothing short of revolutionary and immense, as she paved the way for other female pop stars to achieve work-life balance: Katy Perry, Britney Spears, Jennifer Lopez and Adele all had Las Vegas residencies afterward. by Celine.

“There is no doubt that Céline made Las Vegas cool again. It had a tremendous impact. “Las Vegas is a very different city, a much better city as a result of the impact she had on it,” Clarke said.

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

The hour-long W5/Noovo documentary reveals testimonies from medical experts about Stiff Person Syndrome. Dion’s close friends and early collaborators share their hopes and fears about her heartbreaking health crisis.

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


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