In 2022, Dion announced that she had been diagnosed with Stiff Person Syndrome -- a rare, progressive neurological disorder.
Celine Dion's sister, Claudette, is letting fans know the singer is working hard to get back her strength amid her battle with Stiff Person Syndrome.
In an interview with HELLO! Canada, Claudette shared a hopeful update on her superstar sibling's diagnosis as she battles with the rare neurological disorder. Although the 74-year-old acknowledged that they know "so little" about the illness, she says that Celine is "doing everything to recover."
"There are spasms -- they're impossible to control. 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," she tells the outlet, explaining the symptoms linked to the syndrome. "There's little we can do to support her, to alleviate her pain."
As Claudette revealed last month, their sister, Linda, has moved into Celine's home, where she also lives with her three sons René-Charles, Eddy, and Nelson, to aid in her care.
The rest of the family -- of which the 55-year-old is the youngest of 14 -- has lent their support and strength to the singer as much as possible. "It's comforting for us all [to have them near Celine]... We're crossing our fingers that researchers will find a remedy for this awful illness," Claudette adds.
Celine first shared her diagnosis in December 2022, in an emotional video posted to Instagram where she opened up about the rare and incurable neurological disease. The "My Heart Will Go On" singer shared that while she's finally figured out what is causing her health issues, the disorder has impacted her daily life, and how she performs on stage.
"While we’re still learning about this rare condition, we now know this is what’s been causing all of the spasms that I've been having,” she explained. "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."
While Celine initially postponed her European tour in her December announcement, in May, the GRAMMY-winning singer would go on to cancel all 42 remaining dates on her Courage World Tour.
In a statement, the singer is quoted as saying, "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 percent. 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."
ET spoke with Dr. Tara Zier, a dentist who founded the Stiff Person Syndrome Research Foundation after she was diagnosed with the disease in 2017. The foundation aims to raise money for the development of treatments and a cure.
Zier, whose own symptoms included the left side of her face becoming numb, weakened hips and difficulty in walking, opened up to ET about the serious challenges that lie ahead, though she cautioned cases can vary.
"People can die from complications of the disease. It's serious," she said. "At the same time, I know people who have lived with it for 30-plus years. I think that more information would need to be known about her specific condition. There are different types and different categories. We just don't know enough about [the disease] and that's why the research is so critical, so we can understand it better."
Zier can speak from her own experience that physical therapy is paramount to living a better life with the disease.
"If she can tolerate the physical therapy then there are a lot of pluses as far as strength," Zier explained. "I’ve experienced that myself. I’m a lot stronger than I was in 2017. I’ve been able to gain muscle back. Not entirely but I’ve been able to gain some muscle back. And I see myself, over time, with physical therapy being able to do much more than I was before. So, that’s where I have hope for people with this condition, including Celine. Do what you can and have grace and love for yourself, and if it doesn’t happen right away, it doesn’t mean that it won’t happen."
Zier emphasized that while there's no cure for the disease, recovery also isn't linear. She said the pain can "bounce around" from time to time and patients with the disease can have flare ups. It's why she underscored the importance of living a stress-free life, but therapy's equally important.
"It's a process. There are no guarantees for anything in life. There's no guarantee for recovery. But what are the options? Are you going to sit back and do nothing because there isn't a guarantee or are you going to do what you can to get better?" she said. "That's going to give people the best chance of recovery, is to do what they can to get better, because the alternative is really not moving because of pain, fatigue and any other symptoms they're experiencing. That leads to muscle atrophy, difficult with mobility and potentially being bedridden. So, to give people the best chance is to look at comprehensive healing and to take those steps. It's not easy. It's hard. It's really hard, but that's where I think there's hope. That's what I'm doing."
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