Stiff persons syndrome

By Cheryl, United States, February 7, 2015

Cheryl J. Woodward is a one in a million she has (SPS) Stiff Persons Syndrome
Cheryl J. Woodward, is a 51 year old Michigan woman. She is an Emergency Medical Technician, Registered Medical Assistant and a Certified Nursing Assistant. She has worked a number of medical jobs in our area; including most recently working in a pediatric emergency department.
Cheryl has a rare disease called Stiff Person Syndrome (SPS). It affects only one in a million individuals, worldwide. It is considered a neurological disease, but it is often classified as an autoimmune disease, characterized by alternating rigidity and spasticity of the muscles, tremors, anxiety, and a hyper-excitability of muscles. Emotional stress or even a gentle touch, are known to cause prolonged, often severe, spasms. The average time to diagnose the disease is 7 years, in Cheryl’s case it took 20 years to diagnose, A lack of awareness of the disease is responsible for this prolonged delay in diagnosis. The cause of SPS is unknown, and there is no cure on the immediate horizon. Cheryl had symptoms for 20 years. With each year that she sought help her symptoms got worse. She saw the same PCP for 20 years and he never was able to define what was going on. Finally Cheryl changed to an internal medicine doctor. Cheryl told him that she had been sick for a lot of years and no one has been able to help. First he did Blood work, established a few things she was already aware of. Then he sent her to a Neurologist. This doctor watch a home movie of her spasms, ordered several tests, EEG, EMG, MRI, then came the blood work. It was then that Cheryl requested that he add a GAD test to the blood work (he was pulling five tubes of blood chemistry what is one more test) He said sure.
Three weeks later when all the test results were in, she was finally diagnosed. The Neurologist who listens informed her that she was absolutely right, that her GAD test was positive and there is no doubt, you indeed have this disease. Relief and reality all in the same moment, the reality of a horrible prognosis, yet relief because what she is fighting is real, it has a name and is so rare that it is a one in a million disease. Palliative treatment is all there is for now, (Benzodiazepines) with an occasional study in other countries, a cure may never happen, that does not matter to her, what ails her has a name SPS, now she knows what she is fighting, and that is half the battle. She was a medical professional and she shows up with her own brief summary of what she has, if they doubt or show little care, she has no problem requesting another doctor or nurse who is open to learning about a disease that will spasm her whole body from the neck down, cause tachycardia, low O2 and if they are not careful they can potentially kill her. She is hopeful that with stem cell research or other experimental studies, that she can find something that will restore her to her old self, until then she is a fighter who will continue to defy her odds and try to keep moving, living her best life she can, she will continue to refuse to be a prisoner to her own body.
"I have (SPS) Stiff person’s syndrome. What I am facing is beyond comprehension for most people to wrap their brains around."

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