Patients are a powerful force in driving research for rare disease — we provide critical insights about our diseases and are fueling significant discoveries. We’re excited to join @ChanZuckerbergInitiative’s #RareAsOne Network to learn from and work with other patient-led organizations to accelerate progress on rare disease together.
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.
Director, Stiff Person Syndrome Center
Johns Hopkins Hospital
We need your help.
We need more information.
We need more research.
We need to raise money for a clinical trial.
“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