Emily Bradley is a 22 year old student at Florida State University, ePatient advocate, writer, and speaker. Having been a ‘professional patient’ for many years, Emily uses her experiences to help others become empowered patients, improve the doctor-patient relationship, and help patients find their voice in a disjointed healthcare system. She also consults with app and software designers to create programs that are geared not just for the provider, but for the patient. Emily is a 2013 Stanford Medicine X ePatient Scholar and will be returning to Medicine X in 2014 to present an ignite speech.
At the age of 7, I remember my gym teacher yelling at me for not being able to run. Growing pains, they said, for years. By high school, my health problems were becoming harder to ignore. Countless tests for mononucleosis were performed in hopes of finding a reason for my fatigue. When those lab tests came back normal, I was written off and told to better manage my stress. “Hypochondriac" was whispered behind closed doors and pulled curtains. Despite a complex, legitimate spinal deformity I had had extensive surgery for as a child, no one was willing to do the work to look beyond x-rays—imaging studies that revealed nothing due to the metal rods placed in my spine years earlier. It took two years of doctors and me fighting for my health (and sanity) before I found a rheumatologist and a spine surgeon willing to look outside of the box.
My matriculation into university was not met with the new people, new experiences, and new found freedom my peers were experiencing. Instead, at 18, I was diagnosed with Still’s Disease: a rare type of Autoimmune Arthritis. At 19, I had a spinal revision surgery to remove the metal rods previously placed in my spine (which were discovered to be severely inflamed upon removal).
I started treatment with little effect and sought answers from the Mayo Clinic in January of 2012, where it was discovered that I have an extremely rare genetic mutation indicative of an autoinflammatory disease. The mutation—so rare that it has not been documented to Mayo’s knowledge—is believed to be a new variant of a disease called TNF-Receptor Associated Periodic Syndrome (TRAPS)
Though my diseases continue to progress, I am seeing great success with a combination of biologic, chemotherapeutic, and other immunosuppressant medications (specifically, Anakinra). These daily and weekly injections have given me the strength necessary to get up and start taking steps forward. A year ago, I couldn’t go for a walk outside. Now, I am running trails and training for a 5K.
I am a full time college student at Florida State University (go noles!), studying biology and psychology, and inching my way towards physician assistant school. The intersection of clinical medicine and ePatient advocacy is where my heart lies, and I hope to be one of many working to bridge the gap between patients and providers.
I still fight for quality of life daily, I still push for remission, but my focus now is learning to coexist with my wonky immune system while stopping to smell each and every rose along the way!
For business/press inquiries, questions/comments, app/design consulting services, or if you would like to have Emily as a guest writer or speaker, please contact Emily Bradley at firstname.lastname@example.org