After 40 Years, I Was Diagnosed With the Same Condition As Celine Dion

I do not know Celine Dion, but the invisible chain of stiff-person syndrome binds us. Stiff-person syndrome (SPS) is a rare, progressive neurological and autoimmune disease, characterized by a variety of symptoms including pain, spasticity, and muscle spasms ranging from mild and annoying to strong enough to break bones.

Although the spasms usually attack the back and legs, some patients have problems with their arms, vision, memory, voice, or breathing. Some patients are ambulatory, others use assistive devices—some are bedridden. Although there are limited treatments to relieve symptoms, there is no cure.

I first experienced symptoms in my late 40s, including intermittent stiffness and muscle spasms in my mid and lower back that no Western medicine or alternative treatment could help. Desperate for relief, I devised my own program of swimming, walking, and ibuprofen.

At that time, SPS was largely unknown in the medical community. I too was ignorant even though I had practiced physical therapy for 30 years, had a degree in public health, and had worked in a variety of acute, rehabilitation, and home health settings and with many patients diagnosed with autoimmune and neurological conditions.

By the time I reached 50, I no longer had the energy to practice physical therapy. Fortunately, I had a law degree and I turned my attention full time to my appellate practice. I continued to practice law until 2017 when the increasing pain and stiffness in my back and legs made it impossible for me to concentrate on my work.

During the intervening years, I saw multiple specialists. Unfortunately, many doctors didn’t believe me or the severity of my symptoms and attributed them at various times to spinal stenosis, stroke, depression, and later old age.

In 2020, soon after my 72nd birthday, my fourth neurologist tested me for SPS. I researched the condition and was horrified and despondent when I learned the test results were positive.

In 2022, Dion revealed online that she had been diagnosed with SPS bringing much-needed recognition to this disease. In June 2024, Dion participated in a documentary, I Am: Celine Dion, about her stardom, the toll SPS had taken on her life, voice, career, and her determination to triumph over adversity. Recently, she gave a stunning performance at the 2024 Paris Olympics.

Her documentary portrays her modest childhood, career, and how the muscular spasms affect her entire body and her vocal cords. Dion has therapists come to her home and she uses a nasal spray to control her worst spasms. Her fame and money buy her access to medical care that few of us dream of and she attacks the disease with the same determination and grace with which she built her singing career.

Her notoriety has brought both cheer and resentment to the SPS community. Though doctors now recognize the syndrome, many clinicians and our families and friends frequently don’t understand that we are not Dion, our symptoms and disease progression are not the same as hers, and her Olympic performance did not prove that she is cured. Dion is only one woman and until medical science understands more about autoimmune disease, we are left with few effective treatments and little hope for the future.

At 76, I won’t live to see a cure, but I am buoyed by the memory that in the early 1980s A.I.D.S. seemed like an insurmountable disease, now it is controllable and scientists are working towards a cure. I suspect that one day the same will be true of SPS.

After a lifetime of assisting others with their legal and physical therapy needs, Eileen S. Kotler retired to pursue her interests of traveling with her husband, enjoying her step and grandchildren, extended family and friends, and pursuing her interests in hiking, landscape photography, fused glass, and voter registration. Limited now by stiffness, pain, and fatigue, she hopes her newly acquired Baclofen pump will permit her to resume some of her former activities.

All views expressed are the author’s own.

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