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The Independent UK
The Independent UK
Lifestyle
Isobel Lewis

Celine Dion’s sister says there’s ‘little’ family can do to ‘alleviate her pain’ amid stiff person syndrome

Getty Images

Celine Dion is doing “everything to recover” in the face of intense pain after being diagnosed with stiff person syndrome, her sister has said.

In December, the “My Heart Will Go On” singer shared that she had been diagnosed with the incurable neurological condition, and was cancelling her forthcoming tour dates.

Half a year later, in May, Dion, 55, pulled the remaining dates of her world tour. The Canadian musician said that she was “working really hard to build back my strength”, adding: “I want you all to know, I’m not giving up.”

Speaking in a new interview, her sister Claudette shared that Celine is doing “everything to recover” following her diagnosis.

“She’s doing everything to recover,” Claudette told Hello! Canada, adding: “She’s a strong woman.”

Discussing her sister’s experiences with Stiff Person Syndrome – “an illness we know so little about” – Claudette said that the family could do “little” to “alleviate her pain”.

“There are spasms – they’re impossible to control,” she said. “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."

Claudette said that their sister Linda is living with Celine at her Las Vegas home, which was “comforting for us all”.

Celine, pictured in 2019
— (Getty Images for NARAS)

“We’re crossing our fingers that researchers will find a remedy for this awful illness,” she added. “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.

Symptoms can be triggered by environmental stimuli (like loud noises) or emotional stress. Severe muscle spasms can cause the person to fall down. These symptoms can lead to difficulty walking and over time, even greater disability.

The condition is estimated to affect roughly one in a million people.

Last month, Claudette offered fans another update on her sister’s health. Then, she shared that the family remained hopeful despite them not being able to “find any medicine that works”.

“[Celine is] listening to the top researchers in the field of this rare disease as much as possible,” she said. “I honestly think that she mostly needs to rest. She always goes above and beyond; she always tries to be the best and top of her game.”

Of her sister’s decision to take a break from performing, Claudette added: “At one point, your heart and your body are trying to tell you something. It’s important to listen to it.”

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