Celine Dion’s Sister Gives Update on Singer’s Health: ‘Doesn’t Have Control Over Her Muscles’

Celine Dion and her husband/manager Rene Angelil named their twins Eddy and Nelson. Ethan Miller/Getty Images

Celine Dion’s sister provided an update on the Canadian singer’s health, saying that “she doesn’t have control over her muscles” now.

“What breaks my heart is that she’s always been disciplined. She’s always worked hard,” said sister Claudette Dion in an interview with French outlet 7 Jours.

She noted, “It’s true that in both our dreams and hers, the goal is to return to the stage. In what capacity? I don’t know.” She continued to say that “the vocal cords are muscles, and the heart is also a muscle,” according to a translation.

About a year ago, Celine Dion confirmed she was diagnosed with stiff-person syndrome, a rare neurological disorder that affects one in 1 million people, according to an Instagram video.

“The 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,” Celine Dion said at the time. “I have to admit it’s been a struggle. All I know is singing; it’s what I’ve done all my life.”

In May, the Grammy Award-winning singer canceled her Courage World Tour over the disorder.

“I’m so sorry to disappoint all of you once again,” the 55-year-old said on Instagram at the time. “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.”

According to Claudette Dion, their sister Linda has been living with Celine in the Las Vegas area as she receives care from doctors specializing in stiff-person syndrome.

Claudette Dion also told the French outlet that there isn’t enough research to treat the rare disorder. “That’s what is so upsetting to me. Since these cases are one in a million, scientists have not done that much research since it doesn’t affect that many people,” she said.

She also provided details on the symptoms, telling the magazine: “You know how 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.”

What Is Stiff-Person Syndrome?

According to Johns Hopkins Medicine, stiff-person syndrome, sometimes called SPS, can cause “progressive muscle stiffness and painful spasms” triggered by environmental factors such as cold temperatures, loud noises, or movement.

“The severity and progression of SPS varies from one person to another,” according to the National Organization of Rare Diseases. “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).”

According to Yale Medicine, most people start experiencing symptoms between the ages of 30 and 60.

The muscle spasms from SPS can be “quite severe,” said Dr. Emile Sami Moukheiber of the Stiff Person Syndrome Center at Johns Hopkins Medicine, reported CNN. “Falls from severe spasms are very common. These spasms can be precipitated by startle, severe emotions, and cold weather.”

“Many patients with SPS also have another autoimmune disease, such as type 1 diabetes, vitiligo, and pernicious anemia,” it says. “SPS is also more common in people with certain kinds of cancer, including breast cancer, lung cancer, kidney cancer, thyroid cancer, colon cancer, and lymphomas. However, the reason for these links is still unknown.”

Some patients take a type of benzodiazepine but may need a higher dose of the drug. In some cases, patients take a spinal injection or pill known as baclofen to relax the muscles.