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Céline Dion Reveals She Hid Her Stiff Person Syndrome Diagnosis for 17 Years


Mon 10 Jun 2024 | 11:49 PM
Céline Dion
Céline Dion
Yara Sameh

Céline Dion has opened up about her long battle with stiff person syndrome, a condition she kept a secret from the public for 17 years.

The singer, 56, admitted that hiding her illness from her fans was a heavy burden, describing it as “too much” for her to bear. 

She was diagnosed with the rare autoimmune neurological disorder in 2022 but had been dealing with its effects for nearly two decades.

In a new preview of her upcoming interview with Today show host Hoda Kotb set to air on NBC on Tuesday night, the Canadian singer discussed the pain of keeping her condition hidden from the public.

She admitted that pretending to be fine while feeling like her "body was leaving her" was incredibly difficult.

In the teaser, the acclaimed songstress also said that she initially ignored the signs of her illness, while her late husband, René Angélil, battled throat cancer. Angélil died in 2016 aged 73. 

Dion disclosed: “We did not know what was going on [with me]. I did not take the time... I should have stopped, took the time to figure it out. And like it wasn't enough, my husband as well is fighting for his own life.”

After her husband’s death, Dion said she found it challenging raising her children, René-Charles, 23, and twins Nelson and Eddy, 13, with her career—all while keeping her deteriorating health a secret.

She added: “I had to raise my kids, I had to hide, I had to try to be a hero - while feeling my body leaving me,' she continued. '[I was] holding on to my own dreams.”

However, the Canadian powerhouse vocalist said 'lying' eventually became 'too much,' adding, “Lying for me was... The burden was too much. Lying to the people who got me to where I am today, I could not do it anymore.”

Reassuring Dion, Kotb said: “Not telling the truth was too much to carry” to which Dion replied, “I could not do this anymore.”

After the teaser aired, the broadcaster reflected on her conversation with the acclaimed singer to her cohosts and revealed that the "My Heart Will Go On" singer had confided in her about battling the disease for 17 years.

Kotb shared: “She had it for 17 years and she didn't know what was wrong and she was worried. Her voice was gone, her body was failing her, she was tripping and falling, all these things were happening.”

The journalist added that Dion “almost died from it” but emphasized that the singer is now “on the road” to recovery.

The superstar, whose best-known hits include Think Twice and It’s All Coming Back To Me Now, revealed her diagnosis in December 2022 as she canceled her Courage World Tour.

Stiff person syndrome is a rare neurological disorder that causes progressive muscular stiffness, which can cause spasms.

Dion has documented her health battle in a new Prime Video film called "I Am: Celine Dion", which is set to air on June 25.

Directed by Oscar-nominated filmmaker Irene Taylor, it will offer a behind-the-scenes look at the Canadian singer’s life since being diagnosed and the lengths she has gone to carry on performing.

The main symptoms of SPS are muscle stiffening and spasming and there is currently no cure for the disease, but there are ways for it to be treated including through the use of muscle sedatives and relaxants. Physical and occupational therapy is also a treatment route for people with SPS.

Dion has sold more than 250 million albums during her 40-year career, earning five Grammys, two Oscars, and the Billboard Music Award Lifetime Achievement Icon Award.