Jessamyn Butler
State: Pennsylvania
Chronic Conditions: Ehlers-Danlos Syndrome, Rheumatoid Arthritis, Ankylosing Spondylitis, Degenerative Joint Disease, Osteoarthritis, Hypertrophic Cardiomyopathy, von Willebrand's Disease, Hereditary hemorrhagic telangiectasia
My diseases have caused severe chronic secondary pain that is currently untreated. While I am able to distract myself from the intense and relentless pain at times, it truly overwhelms me and renders me incapable of most thought and action a great deal of the time. It has taken away a lot of my sense of independence, mobility, and general functionality. It has, however, given me the spirit to fight for better treatment from the healthcare providers who dismiss my conditions as "untreatable," as well as advocate for others.
I advocate because I have a medical background and a psychology degree and understand complex medical concepts. This allows me to break down these concepts into easily understandable bits for people who do not have my background, experience, and skills. I have always been a champion for the underdog and take their challenges seriously. We need more research in many fields, but especially in chronic and rare conditions, to make this life more tolerable. It brings joy to my heart to help another person in some way.