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

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

The singer-songwriter is set to give a vivid behind-the-scenes look at her life with Stiff Person Syndrome (SPS).

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

With cheers from the crowd, he wiped away tears and continued: “I can’t believe I’m blessed to have fans in my life. Thank you all from the bottom of my heart for being a part of my journey. This film is my love letter to all of you. Hope to see you all soon.

In the first teaser for the film, which debuted on Thursday, May 23, Dion spoke to the camera while sitting in a chair and stated: “I’ve been diagnosed with a very rare neurological disorder. And I wasn’t ready to say anything. Before. But now I ready,”

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

With tears streaming down her cheeks, she continued: “I miss them so much. 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 his career on hold since the diagnosis in 2022, canceling all the dates of the 2023 and 2024 tour. Speaking to Vogue France, the singer opened up about his struggle in the early stages of the diagnosis: “At the beginning, I would ask myself: why me? How did this happen? Am I done? Life doesn’t give you the answer. I have this disease for some reason. I have two options, like an athlete. or I turn it off and it passes, I stay at home, listen to my song, stand in front of the mirror and sing to myself.

“I have chosen to work with my whole body and soul, from head to toe, with the medical team. I want to be the best. My goal is to see the Eiffel Tower again! … I have this strength in me. I know nothing will stop me. “

The 56-year-old said he had to “learn to live” because there was currently no cure.

He said that he could not confirm his return to the stage: “For four years I said that I will not return, I’m ready, I’m not ready … I can’t stand here and say to you: ‘Yes, in four months’. I don’t know… my body will say. I work hard and tomorrow is another day. But there is one thing that will not stop.

The 56-year-old announced in December 2022 that he had been diagnosed with an incurable neurological disease.

“He did everything to recover,” sister Claudette told Hello! in May, adding: “She is a strong woman”.

Dion also revealed that the condition affects “every aspect” of her daily life, including her singing ability, and that it took her some time to be ready to admit it publicly.

Here is a look at what is stiff man syndrome, symptoms and treatment.

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

Scientists aren’t sure what causes the disorder, but research suggests it could 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 uncontrollable tense muscles.

Symptoms of SPS include muscle stiffness in the arms and legs, and seizures. People with the disease are also often more sensitive than usual to noise, touch and emotional stress, and may experience muscle spasms. This can be dangerous for their mental health and make them afraid to leave the house because they don’t want the noise or smell of the street to affect their body.

Over time, SPS sufferers may develop a hunched or abnormal posture, and be severely impaired in moving or walking. Reflexes will also be affected, which can cause the condition to often fall, unable to catch itself.

SPS is often misdiagnosed as another neurological disease because it is so rare. A misdiagnosis can make health professionals think the patient has Parkinson’s disease, multiple sclerosis, or a phobia.

A blood test is used for definitive diagnosis, which looks at glutamic acid decarboxylase (GAD) levels. People with these conditions have higher than normal levels of GAD.

Doctors will also check the level of antibodies in the blood, as those with SPS will have elevated levels.

SPS has no known treatment.

When treating patients with this disease, doctors usually use drugs including steroids, muscle relaxants, and sedatives to reduce symptoms. Among other immunotherapies, a prescription for intravenous immunoglobulin and plasmapheresis can be given.