What Is Stiff Person Syndrome?
Imagine a full body Charley horse that stops you in your tracks.
Stiff person syndrome (SPS) is a neurological disease with autoimmune features. Symptoms include muscle spasms, hyper-rigidity, debilitating pain, and chronic anxiety. Muscle spasms can be so violent they can dislocate joints and even break bones.
SPS is labeled as a rare disease. But more people are affected than reported due to misdiagnoses. It takes on average seven years to identify. It is often mistaken as Multiple Sclerosis, Parkinson’s, Fibromyalgia, Psychosomatic Illness, Anxiety, Phobia, and other autoimmune diseases.
Patients can be disabled, wheelchair bound or bed-ridden, unable to work and care for themselves.
IGNITE Study at Stanford University
If you have been diagnosed with SPS and tested positive for any of the neural antibodies (i.e., GAD65, Glycine receptor, DPPX, or amphiphysin), you could participate in the IGNITE study conducted at Stanford University.
This study aims to investigate the genetic predisposition to autoimmune neurological diseases with neural antibodies, diseases such as autoimmune encephalitis and SPS. While SPS and autoimmune encephalitis may have some common features, this does not mean that anyone with SPS has had or will have autoimmune encephalitis.
Your participation in this study is completely voluntary and there would be no cost to you to participate.
Scared Stiff
Dr. Scott Newsome
Director, Stiff Person Syndrome Center
Johns Hopkins Hospital
Why the Urgency?
We need your help.
“Raising research funds for the autoimmune condition Stiff Person Syndrome is a deeply personal mission for me. I lost my mother, uncle, and aunt to the autoimmune disease MS. Finding treatments and a cure for SPS could open a world of possibilities for other devastating autoimmune disorders.”
Jacquie Naughton