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Celine Dion's Story Ignites Call for Research After Struggle with Stiff-Person Syndrome

Dr. Amanda Piquet emphasizes the potential impact of Céline Dion’s public disclosure about her struggle with stiff-person syndrome

By Mian HamidPublished about a month ago 3 min read

Celine Dion's Story Ignites Call for Research After Struggle with Stiff-Person Syndrome

Celine Dion's Story Ignites Call for Research After Struggle with Stiff-Person Syndrome

Dr. Amanda Piquet emphasizes the potential impact of Céline Dion’s public disclosure about her struggle with stiff-person syndrome (SPS) on raising awareness and fostering research into the rare autoimmune and neurological disorder.

Dr. Piquet, the director of the autoimmune neurology program at the University of Colorado and the physician who diagnosed Dion, explained that SPS remains largely unknown, even among medical professionals.

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Stiff-person syndrome is a neurological disorder affecting the central nervous system, particularly the brain and spinal cord. The disease manifests with symptoms such as slurred speech, double vision, and severe muscle contractions, which can be so intense that patients lose the ability to walk or speak.

Dr. Piquet elaborates, "Think of it as a failure to put the brakes on the nervous system, leading to symptoms of hyperexcitability and muscle spasms."

In Dion's case, she experienced muscle spasms in her throat and feet, breathing difficulties, vision problems, and severe "crisis" episodes where her body became rigid with excruciating pain. These episodes typically affect the legs or trunk and are often mistaken for seizures, though they differ significantly.

Dr. Piquet compares the episodes to a severe charley horse but affecting multiple muscles, describing them as "extremely distressing and painful," lasting from minutes to hours.

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Celine Dion's Story Ignites Call for Research After Struggle with Stiff-Person Syndrome

SPS is a progressive disease, with symptoms gradually worsening over time. Dr. Piquet notes the unpredictability of these spasms and the variation in severity among patients, making the diagnosis challenging and often delayed. Dion's diagnosis came 17 years after she first noticed symptoms, reflecting the disease's elusive nature and its tendency to mimic conditions like multiple sclerosis or Parkinson’s disease.

With no cure for SPS, treatment focuses on immunotherapy to address the autoimmune aspect and symptomatic therapy, including antispasmodic agents, muscle relaxers, and various physical therapies.

Dr. Piquet acknowledges the determination of many patients to find better treatments, given the devastating impact of the disease. Dion's openness about her condition is expected to be transformative for others with SPS.

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Currently, there are no FDA-approved therapies for SPS, with treatments used off-label. Dr. Piquet emphasizes the need for clinical trials and research to identify the most effective treatments, noting that approximately 2 in every 100,000 people are affected by SPS.

Dr. Piquet and her team are advancing research efforts, including a recently submitted epidemiology study. She urges patients to remain hopeful, highlighting the progress being made in understanding and managing SPS.

"The awareness that Céline brings to the general population, coupled with our research efforts, will drive interest in finding a cure and better treatments for this disease," Dr. Piquet asserts. "The future for SPS is promising, and while a cure remains elusive, there are many ways we can help manage the disease."

The Quran - Chapter Ar-Rahman : 70 - 75

In all Gardens will be noble, pleasant mates.

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Then which of your Lord’s favours will you both deny?

˹They will be˺ maidens with gorgeous eyes, reserved in pavilions.

Then which of your Lord’s favours will you both deny?

No human or jinn has ever touched these ˹maidens˺ before.

Then which of your Lord’s favours will you both deny?

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    Mian HamidWritten by Mian Hamid

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