4 weeks ago I suffered three strokes between ages 21 and 25. My life was turned upside down and I was desperate for connections. I had been a healthy young woman about to graduate college in Washington, DC when I was struck with classic stroke symptoms (that I didn’t know!). Eventually diagnosed with a brain disease, I underwent debilitating treatment and rehabilitation for years. I was devastated when placed on disability at age 25. My career goals seemed over.
Through my treatment, I was blessed with amazing support from my family and friends, but I needed a purpose. I began volunteering with the American Heart Association and soon found a niche for myself – grassroots advocacy. I selfishly recognized that this was a way for me to meet other patients and benefit from some peer support that I desperately needed. In this role, I was a voice for patients with the American Heart Association. I learned that the opinion of patients truly mattered to legislators and donors. Lawmakers would listen to doctors, researchers, healthcare administrators…but the magic happened as soon as a patient shared their story. There was power in giving a voice to survivors and caregivers. I knew I had a job to do!
Unable to work, I had committed my time and energy to volunteering to help heart and stroke patients. I served in a variety of roles including National Go Red for Women Spokeswoman for the American Heart Association. In 2015, I had a return of my initial symptoms and was shocked to learn that I suffered a fourth stroke. This revealed that I had a rare disease called Moyamoya Disease, for which there is no cure. The only treatment to prevent more strokes and debilitation was having two brain surgeries.
I was fortunate that patient communities and support groups were now common. I was even able to talk to other patients who had survived my surgeries before going in or surgery. Thanks to the internet and peer support, I was able to be part of a group of Moyamoya patients. I underwent these grueling nine hour surgeries filled with feelings of pain and fear. Fortunately, after rehabilitation and recovery, my surgeries were declared a success and I now have seven times more blood flow in my brain than I had before. After the great news, I found myself at a crossroads yet again, searing for a new purpose in my life. Now, I am not only a stroke patient advocate, but a rare disease and Moyamoya disease activist too.
I’m thrilled that there is now a trend on #patientexperience. I’m honored to be invited to the Patient Experience Symposium in Boston next week on behalf of Healthsparq and #WTFix. I have been continuously beating the patient advocacy drum for decades. Biotech and pharmaceutical companies are now recognizing our importance and focusing on the #patientperspective. I am one of those patients who share my experiences to improve the healthcare system and find cures.
As a survivor and patient, I’ve lost much in my life but also know that I have gained even more. My purpose in life is solidified: I am here to raise awareness of stroke, cardiovascular disease and rare disease in order to help patients and those who come after me so they don’t have to suffer.
