Celine Dion Opens Up About Living With Stiff-Person Syndrome: What to Know About Rare Autoimmune Disease

Celine Dion is opening up about her life with the rare disease, Stiff-Person Syndrome.

Two years ago, the singer revealed that she was diagnosed with SPS, which at times leaves her completely immobilized.

In a recent interview with Vogue France, she revealed her frustration at not overcoming the disease but remains determined and hopeful for a cure in the near future.

“I haven’t beat the disease, as it’s still within me and always will be. I hope that we’ll find a miracle, a way to cure it with scientific research, but for now I have to learn to live with it. So that’s me, now with Stiff Person Syndrome,” She told the outlet. “Five days a week I undergo athletic, physical and vocal therapy. I work on my toes, my knees, my calves, my fingers, my singing, my voice… I have to learn to live with it now and stop questioning myself. At the beginning I would ask myself: why me? How did this happen? What have I done? Is this my fault?”

As for returning to perform on stage, she said, “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.”

She added, “I don’t know… My body will tell me. On the other hand, I don’t just want to wait. It’s morally hard to live from day to day. It’s hard, 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. It’s the passion. It’s the dream. It’s the determination.”

What to Know About Stiff Person Syndrome:

Stiff person syndrome (SPS) is a rare neurological disorder characterized by progressive muscle stiffness and painful spasms in the trunk and limbs. The spasms can be triggered by sudden movements, loud noises, or emotional distress. SPS affects the central nervous system, primarily involving the brain and spinal cord.

The exact cause of stiff person syndrome is not fully understood, but it is believed to be an autoimmune disorder. In many cases, the immune system mistakenly attacks the body’s own tissues, specifically targeting an enzyme called glutamic acid decarboxylase (GAD), which is crucial for the production of a neurotransmitter called gamma-aminobutyric acid (GABA). GABA plays a key role in regulating muscle tone, and its deficiency can lead to increased muscle activity.

Symptoms of SPS can vary but typically include rigidity in the axial muscles, which affects posture and can lead to a hunched or stiff stance. The muscle stiffness and spasms can significantly impair mobility and may lead to difficulty walking or maintaining balance. Some people with SPS also experience heightened sensitivity to stimuli, anxiety, and depression, which can compound the physical challenges of the disorder.

Diagnosis of stiff person syndrome involves clinical evaluation, the presence of anti-GAD antibodies in the blood, and tests like electromyography (EMG) to assess the continuous motor activity in muscles. Treatment options are aimed at managing symptoms and may include muscle relaxants, anti-anxiety medications, immunotherapies, and physical therapy to improve mobility and muscle function.

For a performer like Dion, SPS poses significant challenges, hindering her ability to move fluidly, execute physical routines, and maintain stability on stage, thus making a huge impact on her craft.