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Evening Standard
Evening Standard
Entertainment
Lizzie Edmonds

Celine Dion’s sister says medics are struggling to treat her rare condition Stiff Person Syndrome

Celine Dion’s sister has shared an update on the singer’s health after she was diagnosed with a rare condition that meant she was forced to cancel her world tour.

Earlier this year, Dion cancelled her Courage World Tour after suffering “severe and persistent” muscle spasms which have prevented her from performing.

The Canadian singer, 55, had previously confirmed she was suffering from a rare neurological condition called stiff person syndrome.

Stiff person syndrome affects people, mainly in their 40s to 60s, with persistent spasms in their lower limbs and torso, according to University College London.

Sensory stimulation such as noise and light touch can also bring on severe spasms.

Speaking to Le Journal de Montreal, via SheMazing, Celine’s sister Claudette said the singer’s medical team are struggling to find a way of treating the condition - but added the family have hope.

Claudette said their sister Linda is caring for Celine and is working with researchers who specialise in the condition.

She said: “We can’t find any medicine that works, but having hope is important.

Celine Dion attending The Metropolitan Museum of Art Costume Institute Benefit Gala 2017 (Aurore Marechal/PA)

“I honestly think that she mostly needs to rest. She always goes above and beyond [when performing], 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.”

Claudette said that her sister was “listening to the top researchers in the field of this rare disease as much as possible” - adding the family hope she will one day return to the stage.

“[Performing] is innate to her, she’s disciplined in every area of her life,” Claudette added.

In May, a statement from the singer’s team said the star had been “unable to successfully prepare and perform” for her tour - which had been scheduled to run from August 26 in Amsterdam, with back-to-back shows until her final performance of 2023 in Helsinki on October 4.

Dion was also planning to kick-off her 2024 performances in Prague on March 6, with shows in Germany, Ireland, Croatia, Switzerland, Hungry, Poland, Austria and ending at the O2 in London – all of which have been cancelled.

The chart-topping singer, who has had two UK number ones with Titanic hit My Heart Will Go On and Think Twice, said: “I’m so sorry to disappoint all of you once again.

“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!”

Dion completed the first 52 dates of the world tour in North America before the Covid-19 pandemic paused the tour in March 2020, and in December she cancelled and rescheduled dates for her European tour, which was due to start in February this year.

At the time she said the spasms were affecting “her daily life” and creating issues for her mobility and vocal cords.

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