I wanted to make a quick post before I head to bed. In the midst of all the craziness today, I never had a moment to acknowledge that today, March 15, 2017, is Stiff Person Syndrome Awareness Day. While this was my working diagnosis at one point, I wanted to write this and share a little bit of information, as I have quite a few friends that have this extremely painful and debilitating one-in-a-million condition.
Stiff Person Syndrome (SPS) is a neurological disorder with characteristics of an autoimmune disorder. The biggest symptom is stiffness/rigidity/spasticity/spasm of muscles, which is painful and potentially hard to treat and in 60% of patients, the antibody GAD65 in the blood. Some may also have GAD65 and other antibodies in their CSF (that's spinal fluid for all the non-medical people) as well. Getting a diagnosis takes an average of 7 years, misdiagnoses, and countless doctors, which as you might imagine, is incredibly frustrating. Even then, treatment is far from easy. Many people respond to high doses of diazepam (Valium), but other common treatments include: IVIG, plasmapheresis, intrathecal Baclofen therapy, immunosuppressants like rituximab, and chemotherapy agents like cytoxan. Stem cell transplants are still in trial phases in hopes of treating and maybe even one day, curing this condition.
Join me in supporting these warrior "zebras" on the 3rd Annual Stiff Person Syndrome Awareness Day!
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!