Celine Dion's sister reveals: Trying to alleviate her pain

Written by Jakob A. Overgaard

Sep.07 - 2023 2:45 PM CET

Photo: Shutterstock
Photo: Shutterstock
Celine Dion, the legendary voice behind "My Heart Will Go On," is grappling with the challenges posed by stiff person syndrome, a rare and incurable disorder.

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This revelation comes from her sister, Claudette Dion, who recently shed light on the singer's health struggles.

In May, Celine had to make the difficult decision to cancel her eagerly awaited world tour due to this health condition. This announcement followed her disclosure of the stiff person syndrome diagnosis to her fans in December through emotional videos on Instagram.

You can see the disclosure here.

Claudette, in a recent conversation with HELLO! Canada, provided further insights into Celine's condition. She shared the family's efforts in consulting top researchers in the field to find potential treatments. Unfortunately, stiff person syndrome, an autoimmune neurological disorder, is known for causing muscle stiffness and painful spasms that can intensify over time. Currently, there's no known cure for it.

Describing the severity of Celine's symptoms, Claudette said, "It's an ailment we are still trying to understand. The spasms are uncontrollable. Imagine waking up in the middle of the night due to a leg cramp. It's somewhat similar, but it affects all muscles. We feel somewhat helpless, as there's little we can do to ease her pain."

Despite the challenges, Celine remains resilient. Claudette admires her sister's strength, stating that Celine is doing "everything to recover." Presently, Celine is managing her condition privately at her residence, accompanied by her three sons: René-Charles, Eddy, and Nelson.

Earlier this year, fans were eagerly awaiting Celine's Courage World Tour. However, as her health began to decline, she felt it was best to cancel the tour. Expressing her feelings on Instagram, Celine wrote, "I'm so sorry to disappoint all of you once again. Touring can be very challenging even when you're at your best. It's not fair to keep postponing the shows. Even though it breaks my heart, it's best that we cancel everything now until I'm truly ready to return to the stage. I want you all to know, I'm not giving up… and I eagerly await our reunion!"

The tour was scheduled to kick off last month and continue until October, with performances planned in several countries, including the Netherlands, France, Belgium, Denmark, Norway, Sweden, and Finland.

When Celine initially revealed her health challenges, she expressed, "I've been dealing with health issues for a long time. It's been tough for me to confront these challenges and discuss what I've been experiencing. I've been diagnosed with a very rare neurological disorder called stiff person syndrome, which affects 1 in a million people. We're still understanding this rare condition, but we now recognize it as the cause of the spasms I've been experiencing."

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