Understanding Stiff-Person Syndrome
- Singer Celine Dion, 55, has been getting ready for the premiere of her new music and movie while battling a rare neurological disorder called stiff-person syndrome (SPS).
- Dion is releasing five new songs for the "Love Again" movie, in which she also makes her acting debut.
- Dion announced last December she was diagnosed with stiff-person syndrome and canceled or postponed several planned performances to focus on her health.
- The disorder that causes your muscles to stiffen particularly in your torso, arms, and legs. The disease affects "only one or two people per million," according to Johns Hopkins Medicine.
- Stiff-person syndrome (SPS) does not have a cure and can worsen over time. However, people diagnosed can manage symptoms with treatment.
Singer Celine Dion is turning to music, as she always has, after being diagnosed with stiff-person syndrome (SPS), a rare neurological disorder. Releasing a new single for the recent romantic comedy movie "Love Again,” she’s drawn tons of support from fans for her commitment to her undeniable artistry.
Leading up to the movie's release, Dion, 55, shared a series of social media posts delivering heartfelt inspirational messages promoting the "Love Again" movie, in which she also makes her acting debut.
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The new movie follows a young woman trying to "ease the pain of her fiancé's death by sending romantic texts to his old cell phone number and forms a connection with the man the number has been reassigned to," according to IMDB, an online resource for movie and entertainment information.
Dion's co-star, Sam Heughan, told Entertainment Weekly the movie was shot in 2020 during the COVID-19 pandemic, before she was diagnosed with stiff-person syndrome. He added with the magic of green screens and good editing, his scenes with Dion "worked out."
“We were in our own bubble in the U.K., and Celine was in Canada,” Heughan said.
“It was difficult, but I think they did some great magic in the movie, and I think those scenes really worked out," he continued.
Dion will have five songs featured in the new movie, including her new hit single, "Love Again."
Celine Dion’s Diagnosis
Celine Dion said in December 2022 that she was diagnosed with stiff-person syndrome. She postponed and/or canceled several concerts scheduled for this Spring and Summer because of her diagnosis.
According to the National Cancer Institute, stiff-person syndrome is a rare, progressive neurological disorder that causes your muscles to stiffen particularly in your torso, arms, and legs. The disease affects "only one or two people per million," according to Johns Hopkins Medicine.
Since sharing her condition publicly, the award-winning singer's celebrity friends have offered words of encouragement and support.
"I wish her so much love and luck, and I know she wanted to be here, but I'm just so happy she's part of this movie," actress Priyanka Chopra Jonas told People magazine at a “Love Again” screening in New York City. Dion did not attend the screening.
The condition produces episodes of muscles "locking up and becoming stiff as a board," Johns Hopkins Medicine described.
"More commonly, it affects women, usually starting in the 40s or 50s. More than 50% of patients have a coexisting non-neurological autoimmune disease, such as Type 1 diabetes or autoimmune thyroid disease," Dr. Andrew McKeon said to Mayo Clinic.
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The disorder has led to spasms that have sometimes caused her difficulties walking and prevented Dion from using her vocal cords "the way [she's] used to."
In her Instagram video announcement, Dion said, "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 talk about everything that I've been going through."
"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 continued.
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Treating Stiff-Person Syndrome
Stiff-person syndrome (SPS), like what Celine Dion has, does not have a cure and can worsen over time. However, people diagnosed can manage their symptoms with treatment.
Johns Hopkins Medicine says symptoms associated with SPS may include:
- Painful muscle contractions
- Muscle spasms often begin in the legs and back
- Difficulty walking due to muscle contractions
- Unsteadiness and falling due to muscle contractions
- Shortness of breath
The National Cancer Institute says muscle-relaxing drugs can help manage SPS symptoms.
"Intravenous immunoglobulin treatment is effective in reducing stiffness, sensitivity to noise, touch, and stress and for improving gait and balance for people with SPS," NCI said.
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According to the American College of Rheumatology (ACR), intravenous immunoglobulin (IVIG) is for people with antibody deficiencies.
"It is prepared from a pool of immunoglobulins (antibodies) from the plasma of people for the purpose of fighting infections," ACR explained.
IVIG side effects may include fever, chills, muscle aches, nausea, and headaches.
Currently, we don't know how Dion is managing her SPS symptoms, but like her family and friends, the SurvivorNet family also wishes her the best.
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