Stiff Person Syndrome
SPS
One in a million people are diagnosed with SPS and seven out of ten affected are women.
What is it?
Stiff Person Syndrome (SPS) is a rare neurological autoimmune disorder that affects 1 in a million people. On average it takes 6 plus years to be diagnosed from the onset of the disease. Many people go undiagnosed or misdiagnosed. There is no cure.
It can run from mild to severe, each person with SPS is different, some are mobile, while others lose mobility with time, like me. Each case is different therefore each medicinal plan is too. But not all work for everyone. Remember there is no cure to this horrific disease.
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How does Stiff Person Syndrome affect the brain?
Stiff-person syndrome (formerly called stiff-man syndrome) affects mainly the brain and spinal cord (the central nervous system), but it causes symptoms similar to those of neuromuscular junction disorders. There, the ends of nerve fibers connect to special sites on the muscle's membrane called motor end plates.
Is Stiff Person Syndrome painful?
Stiff person syndrome, also called Moersch-Woltman syndrome and formerly stiff man syndrome, can also cause painful muscle spasms. The muscle spasms occur randomly or can be triggered by noise, emotional distress and light physical touch. Over time, stiff person syndrome can lead to an altered posture.
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Is Stiff Person Syndrome terminal?
Stiff person syndrome is a rare terminal condition. There are many treatment options available, but none can cure it. The treatment options aim to ease your symptoms while also improving your comfort. Over time, SPS can limit your ability to move or walk.
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What are the first symptoms of Stiff Person Syndrome?
The main symptoms of Stiff Person Syndrome are muscle stiffening in the torso and limbs, along with episodes of violent muscle spasms. These can be triggered by environmental stimuli (like loud noises) or emotional stress. The muscle spasms can be so severe that they cause the person to fall down.
What is SPS?
SPS is an autoimmune neurological disorder with no known cause. It is often found with an Anti-gad blood exam. It affects the limbs, the torso, people spasm, others lose their walking ability, and some die in their sleep because their heart spasms. For the most part SPS takes over one's life. You can no longer sit, go to the bathroom, do your regular daily duties as before. Once SPS hits it controls your moves. It takes over your body. Your body spasms so hard broken ribs have occurred. It is also known as the tin man disease because of how it freezes your body. Gait is developed, then your. muscles have a mind of their own. In my case my left foot would cave into the right and become extremely rigid that if one tries to pry it lose it could break. SPS is also to cause certain cancers and is correlated to other autoimmune disorders. Some develop an exaggerated lumbar curve.
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Why is it important to know about SPS?
It is an extremely rare disease that affects your quality of life.
Medicine that "band-aids" the symptoms:
Valium, Baclofen, immunoglobulin suppressants (IVIG), plasmapheresis, Rituxan.
A chance for remission... but because of lack of research funds, lack of insurance coverage, and it being so expensive it's not often a choice:
Research has shown that an autologous stem cell transplant has put people with SPS in remission. I just has mine and can tell you that although the falls continue, I have not spasmed. It began March 18 and my new birth date is March 24. It's no easy feat but it's my last chance at being a mom and a wife.
Wendy Carrera and Celine Dion share "one in a million" disease
2x
SPS affects twice as many females as males.
Cure?
There are no treatments known to cure SPS.
1956
“Stiff man” syndrome was first described in 1956 by Moersch and Woltman.