Celine Dion’s family feel helpless amid her very painful Stiff Person Syndrome

Singer’s sister speaks out as the My Heart Will Go On star battles the incurable neurological disease
Celine Dion has had to cancel her upcoming tour.
Getty Images
Dominique Hines3 September 2023
The Weekender

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Celine Dion’s sister has said the star’s family can do very little to help her battle through Stiff Person Syndrome.

The My Heart Will Go On singer revealed in December that she had been diagnosed with the incurable neurological condition, which forced her to cancel her forthcoming tour dates.

Then in May of this year, Dion, 55, announced that she was cancelling the remaining dates of her world tour, saying that she was “working really hard to build back my strength” and was "not giving up.”

In a new interview, her sister Claudette said “she’s doing everything to recover. She’s a strong woman," before adding to Hello! Canada, “There are spasms – they’re impossible to control.

Dion performs on the opening night of her since cancelled world tour Courage in Quebec on September 18, 2019
AFP via Getty Images

“You know who people often jump up in the night because of a cramp in the leg or the calf? It’s a bit like that, but in all muscles. There’s little we can do to support her, to alleviate her pain.”

She also revealed that their sister Linda is living with the star at her Las Vegas home, which was “comforting for us all”.

“We’re crossing our fingers that researchers will find a remedy for this awful illness,” she continued. “We love her for the person she is.”

Stiff Person Syndrome is an autoimmune and neurological disorder that causes rigidity in the torso and limbs. Symptoms include stiffening in the torso and limbs, along with muscle spasms, which have affected Dion’s ability to sing and perform.

It is known to impact twice as many women as men, and it’s frequently associated with other autoimmune diseases like vitiligo, thyroiditis, and diabetes.

Scientists aren’t sure what causes the disorder, but research suggests that it might be the result of a faulty autoimmune response in the brain or spinal cord.

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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