Patient Story

Sharing patient perspectives for decades: stroke survivor Lisa Deck on attending the Patient Experience Symposium

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.

Lisa Deck
Lisa is a seasoned advocate, motivational speaker and Co-Founder of Sisters@Heart Foundation. a nonprofit whose mission is to improve the lives of those affected by heart disease and stroke. For years, Lisa has engaged as an advocate, lobbyist and volunteer with the American Heart Association and has served as a Go Red for Women National Spokesperson. With her first being 20 years ago, Lisa has survived four strokes and was finally correctly diagnosed with Moyamoya Disease after her last stroke four years ago. Lisa underwent double brain surgery to treat her rare disease far from home to restore her health. Today, Lisa speaks all over the country as a motivational survivor, patient advocate and stroke and heart health ambassador with hundreds of media engagements under her belt. She is also involved as a Committee Member in Rare New England, a nonprofit dedicated to spreading awareness and providing education to stakeholders in the rare disease community. Lisa lives in Massachusetts with her husband and two children. To learn more about Lisa, visit lisadeck.com or follow her on Facebook, Twitter and Instagram.