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10 Things to Know About Celine Dion's Stiff-Person Syndrome Diagnosis

celine dions stiff person syndrome diagnosis
Source: MEGA

Jun. 19 2024, Published 8:00 a.m. ET

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What Is Stiff-Person Syndrome?

celine dions stiff person syndrome diagnosis
Source: MEGA

According to the National Institute of Neurological Disorders and Stroke, stiff-person syndrome — the rare chronic condition Celine Dion has been diagnosed with — begins with muscle stiffness in the middle part of the body before spreading to the legs and other muscles.

Among the symptoms are abnormal walking, muscle stiffness and muscle spasms.

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Who Is at Risk of Developing the Disease?

celine dions stiff person syndrome diagnosis
Source: MEGA

It affects one out of every 1 to 2 million, though it might be higher because it is often misdiagnosed, per experts.

"It is frequently associated with other autoimmune diseases such as type-I diabetes, thyroiditis, vitiligo, and pernicious anemia," the National Institute of Neurological Disorders and Stroke explained.

Cleveland Clinic explained that the condition can develop at any age, though symptoms often begin in patients in their 30s or 40s.

What Causes Stiff-Person Syndrome?

celine dions stiff person syndrome diagnosis
Source: MEGA

Currently, the exact cause of stiff-person syndrome remains unclear. However, the institute says it may be caused by an autoimmune response in a person's brain and spinal cord.

"People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain," the institute's website read. "A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies."

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Is It Treatable?

celine dions stiff person syndrome diagnosis
Source: MEGA

There is no known cure for stiff-person syndrome, but doctors help patients manage symptoms and slow the progression through medications, therapies and immunotherapies.

"In some cases, the condition can level off and stay the way it is. I have people who are like that — they're no different now than they were 10 years ago," Dr. Simon Helfgott, a rheumatologist at Harvard Medical School, said. "In others, it is a slow, subtle decline."

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When Did Celine Dion Start Experiencing Symptoms?

celine dions stiff person syndrome diagnosis
Source: MEGA

Dion started experiencing symptoms ahead of her Las Vegas residency show. In her October 2021 announcement, she told her fans she needed to delay her Resorts World Theatre performance as she was "experiencing severe and persistent muscle spasms."

The "My Heart Will Go On" singer canceled the remainder of the North American leg of her Courage World Tour in January 2022 due to the COVID-19 pandemic and her lingering muscle spasms. Instead of unveiling the rescheduled dates, she disclosed in April 2022 that she would also delay the European leg.

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Celine Dion Confirmed Her Diagnosis

celine dions stiff person syndrome diagnosis
Source: MEGA

Following the consecutive postponement of her shows, Dion delivered heartbreaking news about her diagnosis in a December 2022 Instagram video.

"I've been dealing with problems with my health for a long time, and it's been really difficult for me to face these challenges and to talk about everything that I've been going through," Dion said in the emotional update, confirming her stiff-person syndrome diagnosis. "I always give 100 percent when I do my shows, but my condition is not allowing me to do that right now."

Despite having the rare disorder, she assured her fans she would remain optimistic amid her battle.

"I have a great team of doctors working alongside me to help me get better and my precious children, who are supporting me and giving me hope," she said. "I have hope that I'm on the road to recovery. This is my focus, and I'm doing everything that I can to recuperate."

"I love you guys so much, and I really hope I can see you again real soon," Dion continued.

Celine ended up canceling the remainder of her tour because of her health issue.

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Celine Dion's Sister Constantly Gave Updates

celine dions stiff person syndrome diagnosis
Source: MEGA

While staying out of the limelight, the "It's All Coming Back to Me Now" songstress' older sister, Claudette Dion, constantly updated the public on her sibling.

In July 2023, Claudine informed Le Journal de Montréal that her family was struggling to find medicine that would work despite being surrounded by the top researchers in the field.

"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," Claudette explained. "At one point, your heart and your body are trying to tell you something. It's important to listen to it."

Their sister Linda also moved in with Celine at her Las Vegas home to care for her.

A few months later, Claudette informed 7 Jours that "The Power of Love" hitmaker could not control her muscles, leaving her potential return to the stage a little blurry.

Before the confirmation of her diagnosis, Celine reportedly lost weight due to her overwhelming schedule.

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Celine Dion Made a Surprising Return to the Stage at the Grammys

celine dions stiff person syndrome diagnosis
Source: MEGA

Celine's rare disease did not stop her from working on a new project while struggling with stiff-person syndrome. She announced in January she would make a documentary and start performing again.

"This last couple of years has been such a challenge for me, the journey from discovering my condition to learning how to live with and manage it, but not to let it define me," she continued.

The following month, she attended the 2024 Grammy Awards to present the Album of the Year award.

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She Raised Awareness During SPS Awareness Day

celine dions stiff person syndrome diagnosis
Source: MEGA

Although she has her battle to face, Celine marked the International SPS Awareness Day with a photo of herself and her three sons: René-Charles, Nelson and Eddy.

"Trying to overcome this autoimmune disorder has been one of the hardest experiences of my life, but I remain determined to one day get back onto the stage and to live as normal of a life as possible," part of her post read. "I am deeply grateful for the love and support from my kids, family, team and all of you!"

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Celine Dion Revealed Her Health Status Nearly 2 Years After Her Diagnosis

celine dions stiff person syndrome diagnosis
Source: MEGA

Over a year after she learned about her diagnosis, Celine opened up about her experience more during her interview with Vogue for the magazine's May issue.

The "To Love You More" hitmaker disclosed she has learned to live with the disease while hoping that someone would find "a miracle cure" for stiff-person syndrome.

"People who suffer from SPS may not be lucky enough or have the means to have good doctors and good treatments. I have those means, and this is a gift," she said. "What's more, I have this strength within me. I know that nothing is going to stop me."

Fans can learn more about Celine's health battle in the upcoming documentary, I Am: Celine Dion, which will premiere on Prime Video on June 25.

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