Celine Dion’s sister says the singer “doesn’t have control over her muscles”

Celine Dion’s sister says the singer “doesn’t have control over her muscles"
Credit: Celine Dion Instagram

Amidst her ongoing battle against a rare neurological disease called Stiff-Person Syndrome, the beloved singer-songwriter, also popularly known as the “Queen of Power Ballads,” seems to be facing a lesser-known struggle that has affected her personal life. The surprising revelation comes a few weeks after the beloved singer was seen attending an NHL hockey game in Las Vegas, which was her first major public outing in nearly four years. 

Celine Dion’s sister, Claudette Dion, gave the latest update on 7 Jours, which is a French magazine by emphasizing that the Grammy winner and international icon is “working hard” but “doesn’t have control over her muscles.” She further added, “What breaks my heart is that she’s always been disciplined. She’s always worked hard. Our mother always told her, ‘You’re going to do it well, you’re going to do it properly.'” 

She continued to tell the publication by shedding some light on the challenges she faces beyond the spotlight, “In our dreams and hers, the goal is to return to the stage. In what capacity? I don’t know.” She also states Celine’s ultimate hope is to return to the stage though “the vocal cords are muscles, and the heart is also a muscle. This is what gets me. Because it’s a one out of a million case, the scientists haven’t done that much research because it hasn’t affected that many people.” 

In addition to this, family charity Fondation Maman Dion has been overwhelmed with messages of support for the global star who is noted for her powerful skilled vocals. “Some people have lost hope because it’s an illness that isn’t well known. If you knew the number of phone calls the Foundation receives about Celine! People tell us they love her and are praying for her,” said Claudette.

The news has grabbed major headlines all over again as the update comes from her close family member, after Dion canceled all Courage World Tour dates through 2024 earlier this year due to the singer’s diagnosis which she shared with the world last December. As per the message posted on Instagram, the “My Heart Will Go On,” singer, 55, confirmed that the disorder has affected her ability to walk and sing, thus halting all of Celine’s live performances and scheduled tours.  


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A post shared by Céline Dion (@celinedion)

Due to this, in May, Dion had to announce to her fans that she had officially canceled her 2024 Courage World Tour dates as a result of her continued health concerns.

“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,” she said in a statement. “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.” Dion added, “I want you all to know I’m not giving up, and I can’t wait to see you again!”

Previously, in an interview with Hello! Canada magazine, Claudette Dion called her sister “a strong woman” who is “doing everything to recover” from the illness, but with no known cure the family can do little but hope medical researchers eventually “find a remedy for this awful illness.”

Claudette Dion also told the same publication by admitting that “It’s an illness we know so little about,” candidly reflecting on symptoms linked to the syndrome.  She further explains, “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 says, dismayed.

“There’s little we can do to support her, to alleviate her pain.” Later, Claudette ultimately addresses the fans by proudly saying, “They love Celine, not only for the voice she has, but also for the human being she is. For the woman she has become, for the mother she has become. She concluded by simply stating, “We love her for the person she is.”

As per the National Organization for Rare Disorders

Stiff person syndrome (SPS) is a rare acquired neurological disorder that most often causes progressive muscle stiffness (rigidity) and repeated episodes of painful muscle spasms. Muscular rigidity often fluctuates (i.e., grows worse and then improves) and usually occurs along with the muscle spasms. Spasms may occur randomly or can be triggered by a variety of different events or circumstances including a sudden noise, light physical contact or when exposed to cold. The severity and progression of SPS varies from one person to another.

If left untreated, SPS can potentially progress to cause difficulty walking and significantly impact a person’s ability to perform routine, daily tasks. Although the exact cause of SPS is unknown, it is thought to be an autoimmune disorder and sometimes occurs along with other autoimmune disorders (e.g., thyroid disease, diabetes, pernicious anemia [b12 deficiency], and vitiligo). SPS has been described in the medical literature under many different, confusing names.

Originally described as stiff man syndrome, the name was changed to reflect that the disorder can affect individuals of any age, race, ethnicity and gender. Like other autoimmune disorders, the majority of individuals with the condition are females. SPS is considered by many clinicians and researchers to be a spectrum of diseases ranging from the involvement of just one area of the body to a widespread, rapidly progressive form that also includes involvement of the brain, brain stem and spinal cord.”