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Sara Needs funds to pay for SPS Treatments
$515 Raised
51% of $1k goal
9 contributors
0 days left
Ended Jul 26, 2014
Please help Sara payoff bills @ Comprehensive Cancer Centers for IVIG treatment; the most effective treatment for her rare disorder. Extending for short time, to close the remaining gap of 1019.00 that's needed. More ...
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Sara or, Firuzeh to her family, was diagnosed several years ago with Stiff Person Syndrome. Stiff person syndrome (SPS) is a rare neurologic disorder found mostly in people with severe auto-immune disorders. After approximately a six year search across several states for a diagnosis, she began Intravenous immunoglobin (IVIG) in Late 2011. The frequency required today is weekly. She has a large outstanding bill with the Cancer treatment center where she’s treated. To continue treatment it’s important this be paid. Please help share her story globally & aid in reaching her goal.

Stiff person syndrome (SPS) is a rare neurologic disorder of unclear etiology characterized by progressive rigidity and stiffness. The stiffness primarily affects the truncal muscles and is superimposed by spasms, resulting in postural deformities. Chronic pain, impaired mobility, and lumbar hyperlordosis are common symptoms. Spasms can be violent and unpredictable, sometimes breaking bones and often leaving sufferers afraid to leave the home. Patients become very sensitive to touch and sound, which can sometimes trigger spasms. The exact mechanism of the condition is unclear. It has been established that SPS patients generally have glutamic acid decarboxylase antibodies, which seldom occur in the general population. The antibodies are often thought to be the cause of the condition.

SPS is difficult to diagnose because there is no specific laboratory test that confirms its presence. Cerebrospinal fluid and Electromyography tests can help confirm the condition's presence by finding antibodies against GAD and involuntary motor unit firing. Early recognition and treatment slow the disease's progression, but a majority of patients eventually are unable to function independently. Benzodiazepine-class drugs are the most common treatment; they are used for symptom relief from stiffness. Other common treatments include Baclofen and Intravenous immunoglobin. SPS occurs in about one in a million people and is most commonly found in middle-aged people. A small minority of patients have the paraneoplastic variety of the condition. Another variant of the condition, stiff-limb syndrome, primarily affects a specific limb. SPS was first described in 1956. Diagnostic criteria were proposed in the 1960s and refined two decades later. In the 1990s and 2000s the roles of antibodies in the condition became more clear.

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