A Journey from Diagnosis to Advocacy: A Story of Resilience and Purpose
By Deanna Zuber – Bayer Consumer Health, U.S. eCommerce Sales
"We are not just fighting for lives – we are championing the hearts of everyone to have access to the support and care to they need to lead healthier lives. Because Team Bayer believes in a world where 'Health for all, Hunger for none' is not just a mission – it's a reality."
In September 2018, my life changed dramatically when I was diagnosed with "Moyamoya" disease, a rare, progressive cerebrovascular disorder that narrows blood supply at the base of the brain. Fragile blood vessels proliferate around a blocked artery, resembling a “puff of smoke” or “Moyamoya”, a term coined by the Japanese team that first described the disease. It affects children and adults, often presenting symptoms like Transient Ischemic Attacks (TIAs), strokes, headaches, and seizures. There is no known cause or cure. However, current research by Stanford Health has discovered key proteins in patients’ cerebral spinal fluid that could explain Moyamoya disease development and predict surgery outcomes.
My diagnosis came after experiencing persistent symptoms that were easy to dismiss but impossible to ignore: loss of balance, dizziness, blurred vision in my right eye, abrupt headaches, swollen left side of my neck with a rash, jaw pain, random numbness in my left-hand, short-term memory loss and the most frightening – aphasia, the loss of speech comprehension. I suffered in silence for about a year as these symptoms progressed. Fear, fatigue, and denial almost cost me my life when my symptoms culminated in a shocking ischemic stroke on my left side while alone in my kitchen on September 11, 2018.
Realizing the threat of my situation, I immediately took an aspirin, fearing a potential heart attack. Drawing on my experience at Bayer and collaborations with the American Heart Association (AHA), I understood the urgency of acting F.A.S.T. (Face – Arm – Speech – Time, 911). In that moment, aspirin and prayers became my only source of hope before dialing 911. Trusting a brand like Bayer® Aspirin and its indication for prevention with my life was an extraordinary moment, especially when this brand is manufactured by my very own employer of 23 years, Bayer. Of all medications, aspirin is one of the #1 medications prescribed to Moyamoya patients for the health of their bypasses. This wasn’t just a coincidence... it was a personal call to action!
Naturally, I turned to the experts in cardiovascular health – Bayer – and my dear friend and colleague Dr. Rosa Coppolecchia, Sr. Medical Director Global Clinical Lead of Thrombosis and Vascular Diseases at Bayer Pharma. Dr. Rosa was instrumental in coaching me with the right questions and connecting me with best medical resources for my condition. We both aligned on the same world-renowned neurosurgeon, Dr. Gary Steinberg of Stanford Health in Palo Alto, CA who specializes in Moyamoya. With more than 32 years of Moyamoya revascularization expertise, The Stanford Moyamoya Center offers a highly experienced Moyamoya Team who perform up to 120 revascularization procedures a year making Stanford the largest Moyamoya referral center in the US and Western world. Global statistics suggest Moyamoya disease impacts approximately one in two million people, but Stanford Health’s research suspects the actual worldwide reality to be one in 200,000 people since most cases go undetected or misdiagnosed, such as migraines, multiple sclerosis, and vasculitis – an area where I personally experienced misdiagnosis.
Deanna Zuber and Dr. Rosa Coppolecchia 2019
On November 13, 2018, I underwent an 8-hour intracranial and extracranial bypass. The surgery would require taking my scalp artery and bypassing it directing into another artery to revascularize the right side of my brain. It would also include suturing a piece of the same artery onto my brain to generate a new blood supply. All of which would be delicately stitched with needle and thread. At my last clinical review at Stanford in 2022, I learned my bypass remains patent and 60% of blood flow has been restored to the right side of my brain, and I am cleared for the next six years! While prognosis is very positive, the reality of patients living with Moyamoya remains. For me, it has evolved into a new normal by shaping my daily life with vulnerability, resilience, and grace.
From Recovery to Advocacy
Recovery was more than regaining my strength; it was about redefining my purpose and the first step on my path to becoming a passionate advocate for cardiovascular health and stroke awareness. I am a longstanding Bayer, Consumer Health Heart Captain and key supporter of various Bayer Cardio Aspirin and AHA Northern New Jersey community initiatives. In October, 2023 I lead the AHA Northern NJ Heart Walk campaign as the ONE BAYER project lead.
In 2024, I plan to raise stronger awareness for Women’s Heart Health by leveraging AHA’s “Go Red for Women” platform and bring learnings to Bayer’s Consumer Health Sales GROW Business Resource Group of approximately 120 women which I help co-lead. I was also honored to be recognized and voted to the AHA of Northern New Jersey Regional Board of Directors on their centennial year, 2024. This opportunity further empowers me to influence and strengthen my commitment to Bayer’s mission, allowing me to share my story and unite our organization as ONE BAYER to collectively help people live longer – and stronger healthier lives.
American Heart Association Northern New Jersey Heart Walk as ONE BAYER – October 13, 2023
This February, at Bayer’s 2024 National Customer Meeting, I received the incredible honor of the 2023 LIFE Award, a recognition of not just exceptional sales results in my role of leading eCommerce for our Drug customers, CVS and Walgreens, but embodying the values that at that heart of our culture at Bayer. This humbling recognition highlights the importance of community, leadership, and the power of bringing your whole authentic self to every endeavor, including being a devoted single mother and role model to my son, Dante (age 13).
Despite the ongoing journey with Moyamoya, which remains a part of my daily life, I stand as a testament to the fact that with resilience, a supportive community, and quality care, it is possible to thrive beyond a diagnosis. I am committed to not only living my best life but ensuring others have the resources and support to do the same. As a member of the World Moyamoya Alliance community impact team, I've had the privilege of coaching patients and spreading awareness of Bayer’s and AHA’s missions at a global scale. I am also paying it forward and channeling my healing by creating "Moyamoya Brave," a new social media platform on Facebook and Instagram (@moyamoyabrave) to redefine resilience and empower the Moyamoya community from bruised to brave. This platform has become a catalyst of inspiration, education, and support, connecting patients, loved ones, and medical professionals worldwide.
I am eternally grateful to Bayer, my medical team, my family, and the community that stands with me. Together, we are not just fighting for lives; we are championing the hearts of everyone to have the support and care to lead healthy, fulfilling lives.
Because at the heart of it, we believe in a world where 'Health For all' is not just a mission; it's a reality.
Aspirin is not appropriate for everyone so be sure to talk to your doctor before beginning an aspirin regimen. Use as directed.