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Celine Dion has Stiff Person Syndrome. Here's what this doctor wants you to know about the disease

OpinionCeline Dion has Stiff Person Syndrome. Here's what this doctor wants you to know about the disease

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In the realm of rare diseases, Stiff Person Syndrome (SPS) stands out as a perplexing and debilitating condition that affects a tiny fraction of the population. Often misdiagnosed and misunderstood, SPS has only recently gained attention after Grammy Award-winning singer, Celine Dion, divulged her diagnosis of the rare neurological disease.

SPS, though uncommon, carries a profound impact on the lives of those it afflicts. Characterized by episodes of muscle stiffness and spasms, and often accompanied by debilitating pain, SPS can significantly impair mobility and daily functioning. While a definitive cause remains unknown, many theorize it to be an autoimmune disorder that attacks the neurological system. Like many other autoimmune and neurological disorders, SPS leaves patients and health care providers grappling with uncertainty.

SPS most commonly develops in people ages 40 to 50. It is more often diagnosed in women than men, and is thought to affect one to two people in a million. However, SPS specialists now consider SPS to be on a spectrum of disorders, meaning it may be more common than originally believed to be.

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While no current treatment cures SPS, there are some treatments that can help manage symptoms and improve quality of life.

One of the most difficult aspects of all rare diseases, including SPS, lies in the ability to recognize symptoms and diagnose the disease. Frequently misinterpreted as psychosomatic or lumped into a broader neurological disease category, individuals with SPS often endure a prolonged and frustrating time before receiving an accurate diagnosis. The lack of awareness among healthcare professionals compounds this challenge, leading to delayed treatment and exacerbation of symptoms. As a result, patients are dealing with not only the physical manifestations of their illness but also the emotional toll of navigating a healthcare system ill-equipped to address their needs.

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Oftentimes, it takes grassroots effort organized by patients themselves to bring a rare disease into light. Moira Papp, an otherwise healthy 56-year-old mother of three, decided not to be an observer after she received the devastating news of having SPS. Like many other women who receive a difficult medical diagnosis, she knew that she needed to do whatever she could to ensure she would be present for her children.  

When I asked Moira about her journey and diagnosis, this is what she had to say, “my symptoms were constantly being dismissed and after falling at my son’s baseball game in front of a large crowd, I decided to go to Mayo Clinic to see if I could get answers.” 

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She also said, “Women should trust their instincts. The medical community is busy, and their hands are tied by the constraints of the current medical landscape. You must believe in yourself and never take the answer that is only in your head. Keep advocating for yourself. Push until you get the answer. Don’t accept ‘no.’”

Following her diagnosis, she decided to get involved, saying, “I made it my job to learn who was doing what in the rare disease space. Working with Stiff Syndrome Person Research Foundation (SSPRF), Moira is now helping to fundraise and create a patient registry for the rare illness. Building a registry for uncommon diseases is hugely important in helping to advance research and increase our understanding of these often under-diagnosed conditions. 

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Rare disease registries can serve as catalysts for research by fostering collaboration among academic institutions, the pharmaceutical industry, and patient advocacy groups.

For those living with SPS, each day unfolds as a delicate balancing act, navigating the unpredictable terrain of their bodies while clinging to hope and perseverance. Faced with limited treatment options and insufficient research funding, individuals with SPS and their allies continue to mobilize and raise awareness to transform isolation into solidarity and uncertainty into action.

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