Stiff Person Syndrome Video – Stiff Person Syndrome viral Video

Stiff Person Syndrome full Video

With World Rare Disease Day 2019 on the horizon, I think it’s time to get real about what people with rare diseases experience on a daily basis.

I just finished crushing my muscle relaxing medications and pushed them through my surgically placed PEG-J feeding tube. Yes, that’s a part of my normal routine.

I have lived with pediatric onset stiff-person syndrome (SPS) for almost seven years now after years of misdiagnoses.

SPS is a rare, progressive neurological disorder with characteristics of an autoimmune disease that typically strikes people between the ages of 30 and 60. It tends to be more prevalent in women. I happen to be one of the outliers who was diagnosed as a kid.

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Currently, there are no statistics to tell us how rare it is across the globe to be diagnosed at a young age.

This is partly due to frequent misdiagnosis of SPS (which is true with adults as well, but there is more available data on their cases since the first reported case in 1956).

According to the National Organization for Rare Disorders (NORD), on average, SPS takes about seven years to accurately diagnosis – a diagnostic delay so long, that many are at the mercy of their bodies, hoping irreversible damage won’t be caused during their journey to a diagnosis.

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SPS is often diagnosed with a blood test for the antibody GAD65. When found in high concentrations (usually 60-80% of patients), a lumbar puncture is then done to see if the GAD65 is in the cerebrospinal spinal fluid, as well as an EMG (electromyography — a test in which needles are inserted into the muscle to record their activity) and a physical exam.