What is stiff person syndrome? Celine Dion opens up about living with the condition

Celine Dion was diagnosed with stiff person syndrome in 2022 (Frazer Harrison / Getty Images)
Celine Dion was diagnosed with stiff person syndrome in 2022 (Frazer Harrison / Getty Images)

Celine Dion tearfully thanked fans for their support at the premiere of her upcoming documentary, I Am: Celine Dion.

The singer-songwriter is set to offer a candid behind-the-scenes glimpse into her life with Stiff Person Syndrome (SPS).

“A couple of days ago, I saw a message from a fan,” she told the audience at the launch event. “And it said, ‘We’re not here for the apples, we’re here for the tree’.”

With cheers from the crowd, she wiped away tears and continued: “I cannot believe how fortunate I am to have my fans in my life. Thank you to all of you from the bottom of my heart for being part of my journey. This movie is my love letter to each of you. I hope to see you all very, very soon.”

The first teaser for the film, which debuted on Thursday, May 23, has Dion speaking into the camera while seated in a chair and stating: "I have been diagnosed with a very rare neurological disorder. And I wasn’t ready to say anything before. But I’m ready now,”

In between clips of her in physical therapy, she adds: “I’m working hard every day. But I have to admit, it’s been a struggle.”

With tears rolling down her cheeks, she continues: “I miss it so much. The people. I miss them. If I can’t run, I’ll walk. If I can’t walk, I’ll crawl. And I won’t stop.”

The singer previously had to put her career on hold since her diagnosis in 2022, cancelling all her 2023 and 2024 tour dates. Speaking to Vogue France, the singer opened up about her struggles in the early stages of diagnosis: “At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault? Life doesn’t give you any answers. You just have to live it. I have this illness for some unknown reason. The way I see it, I have two choices. Either I train like an athlete and work super hard, or I switch off and it’s over, I stay at home, listen to my songs, stand in front of my mirror and sing to myself.

“I’ve chosen to work with all my body and soul, from head to toe, with a medical team. I want to be the best I can be. My goal is to see the Eiffel Tower again! … I have this strength within me. I know that nothing is going to stop me.”

The 56-year-old said that she has to “learn to live with it” as there is currently no cure.

She said she couldn’t confirm a return to the stage: “For four years I’ve been saying to myself that I’m not going back, that I’m ready, that I’m not ready … As things stand, I can’t stand here and say to you: ‘Yes, in four months’. I don’t know … My body will tell me. I’m working very hard and tomorrow will be even harder. Tomorrow is another day. But there’s one thing that will never stop, and that’s the will.”

The 56-year-old revealed in December 2022 that she had been diagnosed with the incurable neurological condition.

“She’s doing everything to recover,” her sister Claudette told Hello! in May, adding: “She’s a strong woman”.

Dion also shared that the condition affected “every aspect” of her daily life, including her ability to sing, and that it took her a while to be ready to admit it publicly.

Here is a look at what stiff person syndrome is, its symptoms and treatments.

What is stiff person syndrome?

Stiff person syndrome (SPS) is a rare progressive neurological condition. It affects twice as many women as men, and it is frequently associated with other autoimmune diseases like vitiligo, thyroiditis and diabetes.

Scientists aren’t sure what causes the disorder but research suggests it might be the result of a faulty autoimmune response in the brain or spinal cord.

The rare medical condition affects only one in a million people and causes muscles to tense uncontrollably.

What are the symptoms of stiff person syndrome?

Symptoms of SPS include stiff muscles in the arms and legs, and spasms. Those with the condition are also often more sensitive than usual to noise, touch and emotional stress, and can experience muscle spasms as a result. This might be harmful to their mental health and make them afraid to leave their homes because they don’t want street noises or smells to trigger their bodies.

Over time, SPS sufferers might develop hunched or abnormal postures, and be too disabled to move or walk. Their reflexes will also be affected, which could lead to those with the condition frequently falling, unable to catch themselves.

How is stiff person syndrome diagnosed?

SPS is often misdiagnosed as other neurological diseases because it is so rare. The misdiagnoses might make healthcare professionals think the patient has Parkinson’s disease, multiple sclerosis anxiety or phobias.

A blood test is used to get a definitive diagnosis, which looks at the glutamic acid decarboxylase (GAD) levels. Those with the condition have higher levels of GAD than normal.

The doctor will also look at the level of antibodies in the blood, as those with SPS will have elevated levels.

Is there a cure for stiff person syndrome?

SPS has no known treatment.

When treating patients with this illness, physicians mostly use drugs including steroids, muscle relaxants, and sedatives to relieve symptoms. Among other immunotherapies, prescriptions for intravenous immunoglobulin and plasmapheresis may be given.