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Celine Dion's Sister Gives Grim Update on Singer's Rare Illness

The "Because You Loved Me" artist was diagnosed with Stiff Person Syndrome.

In December, Celine Dion revealed that she had been diagnosed with the rare neurological condition Stiff Person Syndrome. Now, her sister has shared an update on her health, and it's a heartbreaking one. In an interview with Le Journal de Montréal, Claudette Dion opened up about how their family is supporting Celine through her diagnosis, but shared that they haven't been able to find a medicine that helps the star just yet. But, she added that the Grammy-winner hasn't given up hope that her health will improve.

Read on to see what Claudette had to say and to learn more about Celine's rare condition.

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Celine shared her diagnosis last year.

In December 2022, Celine opened up about her diagnosis in a video posted on Instagram. After explaining that she didn't feel ready to open up before, she said, "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. While we're still learning about this rare condition, we now know this is what's been causing all of the spasms I've been having."

She continued, "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."

Celine explained that she would not be restarting her tour, which had been scheduled to begin in February. Still, she said she was hopeful she'd be able to perform live once again.

"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," she added. "I'm working hard with my sport medicine therapist everyday to build back my strength and my ability to perform again."

Stiff Person Syndrome is very rare.

Celine Dion performing in London in 2019
Tom Rose / Shutterstock

According to the Cleveland Clinic, Stiff Person Syndrome is "a rare chronic condition that causes muscle stiffness and painful muscle spasms. The severity of symptoms varies from person to person. There's no cure for SPS, but treatment can help manage symptoms and slow the progression of the syndrome."

Like Celine said in her video, the institution also notes that Stiff Person Syndrome is rare and only affects one in a million people.

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One of Celine's sisters moved in with her.

Celine Dion at the premiere of "Beauty and the Beast" in 2017
Tinseltown / Shutterstock

Claudette told Le Journal de Montréal (via Page Six) that their other sister, Linda Dion, moved in with Celine to give her additional support. The Canadian singer also lives with her three sons—22-year-old René-Charles Angélil and 12-year-old twins Eddy and Nelson Angélil—who she welcomed with late husband René Angélil.

"When I call her and she's busy, I speak to my sister Linda who lives with her and tells me that she's working hard," Claudette said. "She's listening to the top researchers in the field of this rare disease as much as possible."

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Her condition hasn't improved much.

Celine Dion at the 2017 Billboard Awards
Kathy Hutchins / Shutterstock

However, Claudette also explained that they haven't seen much improvement in Celine's condition because they haven't found the right course of treatment. "We can't find any medicine that works, but having hope is important," she said.

Her sister also said that Celine made the right decision to stop touring, at least for now.

"I honestly think that she mostly needs to rest," Claudette said. "She always goes above and beyond, she always tries to be the best and top of her game. At one point, your heart and your body are trying to tell you something. It's important to listen to it."

She added, "It's innate to her, she's disciplined in every area of her life."

Celine recently released new songs.

Celine Dion in New York City in 2020
MediaPunch/Bauer-Griffin/GC Images via Getty Images

Even though she is taking time off from live performance, Celine has released some new music for fans and appeared in a movie. She starred as a fictionalized version of herself in Love Again, which premiered in May. Filming took place prior to Celine sharing her diagnosis. For the film's soundtrack, the 55-year-old recorded five new songs.

Celine promoted the movie and her new songs on social media, and she's also posted looks back at big moments in her career. The singer shared another health update in May when she canceled the remainder of her Courage World Tour.

"I'm so sorry to disappoint all of you once again," she wrote in an Instagram caption. "I'm working really hard to build back my strength, but touring can be very difficult even when you're 100%. It's not fair to you to keep postponing the shows, and even though it breaks my heart, it's best that we cancel everything now until I'm really ready to be back on stage again. I want you all to know, I'm not giving up… and I can't wait to see you again!"

Lia Beck
Lia Beck is a writer living in Richmond, Virginia. In addition to Best Life, she has written for Refinery29, Bustle, Hello Giggles, InStyle, and more. Read more
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