Celine Dion reveals Stiff Person Syndrome diagnosis — what are the symptoms?

LONDON, ENGLAND - JULY 05: Celine Dion performs live at Barclaycard Presents British Summer Time Hyde Park at Hyde Park on July 05, 2019 in London, England. (Photo by Samir Hussein/Redferns)
Celine Dion was diagnosed with Stiff Person Syndrome, an incurable and rare neurological disease that can cause severe muscle spasms. (Photo by Samir Hussein/Redferns)

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On Thursday morning, Celine Dion revealed that she's been diagnosed with Stiff Person Syndrome, an incurable and rare neurological disease that can cause severe muscle spasms.

In an emotional Instagram video, the Canadian singer said that her condition — which affects approximately one in a million people — has forced her to cancel or postpone a series of upcoming concert dates.

"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…It hurts me to tell you that I won’t be ready to restart my tour in Europe in February," Dion wrote in the post's caption.

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In the clip, the 54-year-old said that while the condition impacts her daily life and causes discomfort, she's relieved to finally know what's going on.

"The spasms affect every aspect of my daily life, sometimes causing difficulties when I walk and not allowing me to use my vocal cords to sing the way I'm used to...I have to admit it's been a struggle," she said. "...While we're still learning about this rare condition, we now know that this is what has been causing all of the spasms that I've been having."

The mother-of-three added that she has a "great team" of doctors working to relieve her symptoms, and that her children have been vital in delivering support and hope.

Woman  with Stiff Person Syndrome rubbing their sore back
Stiff Person Syndrome affects the central nervous system, specifically the brain and spinal cord. (Photo via Getty Images)

What is Stiff Person Syndrome (SPS)?

As per the Stiff Person Syndrome Foundation, the condition affects the central nervous system, specifically the brain and spinal cord.

People with SPS "can be disabled, wheelchair bound or bed-ridden, unable to work and care for themselves." The syndrome is characterized by muscle spasms and rigidity, severe stiffness and pain.

SPS patients also have a heightened sensitivity to stimuli such as noise, touch, and emotional distress — which can set off the spasms.

While SPS is a rare disease, more people are affected than reported due to misdiagnoses. Overall, it can take up to seven years to identify.

SPS can often be mistaken for Multiple Sclerosis, Parkinson’s, fibromyalgia, psychosomatic illness, anxiety, phobia and other autoimmune diseases.

What are the signs and symptoms of Stiff Person Syndrome?

The typical symptoms of SPS include muscle rigidity, hyper-stiffness and "spasms in muscles of the trunk, including the back, and limbs." The tremors' severity is variable from episode to episode.

Moreover, the neurological disease has autoimmune features can also include "debilitating pain, chronic anxiety" and muscle spasms "so violent they can dislocate joints and even break bones."

The typical symptoms of Stiff Person Syndrome include muscle rigidity, hyper-stiffness and pain. (Photo via Getty Images)
The typical symptoms of Stiff Person Syndrome include muscle rigidity, hyper-stiffness and pain. (Photo via Getty Images)

In the early stages of SPS, spasms and stiffness may be subtle and fluctuate on a daily basis. There can be periods when symptoms seem stable, while other times they can be more noticeable and rapid.

At times, the muscle spasms may be brief, lasting minutes. However, they can also last hours or days.

Other key warning signs include changes in posture, increased stress and anxiety, and troubles breathing.

If you or someone you know if experiencing any of the above symptoms, contact your doctor or a medical professional as soon as possible.

Who is at risk of Stiff Person Syndrome?

SPS is extremely rare and affects twice as many women as men. Symptoms can occur at any age but usually develop between ages 30 and 60.

The condition is usually associated with other autoimmune diseases such as vitiligo, diabetes, pernicious anemia and thyroiditis.

As a whole, health professionals are unsure what exactly causes SPS, but some research indicates that it's the result of a faulty autoimmune response in the spinal cord and brain.

In-home nurse helping Nurse helping senior woman with physical therapy in her home man walk down hallway
Currently, there is no cure for Stiff Person Syndrome. Treatment focuses on pain relief and symptom management. (Photo via Getty Images)

How is Stiff Person Syndrome treated?

Currently, there is no cure for SPS. Treatment focuses on pain relief and symptom management associated with muscle spasms, such as physiotherapy, a stretching and strengthening program, and massage therapy.

In some patients, immunotherapy and other medications may help to reduce stiffness, pain, and specific autoimmune abnormalities. That said, most people with SPS have at least some degree of disability.

If depression and anxiety is present, mental health therapy is encouraged, along with visiting a pain and chronic illness centre for regular check-ups.

Can I prevent Stiff Person Syndrome?

As scientists do not know what causes SPS, there's no surefire way to prevent the condition.

However, it's recommended that you do what you can to look after your mental and physical health through stress management, exercising regularly, getting adequate sleep and eating a healthy diet.

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