The Community Advisory Board (CAB), comprised of patients, patient advocates, and caregivers, provides insights, guidance, and co-leadership throughout phase II of The Center’s Economic Impacts project. This article features the personal story of one of our CAB members.
Dorothy Winningham’s life is a tapestry of resilience, duty, and an unwavering caregiving spirit. She retired in 2008 after a successful career at Wachovia Securities, now known as Wells Fargo. Two years after relocating from Virginia to Georgia, Dorothy finds solace and joy in reading inspirational books, fishing with her husband, and gardening. However, behind these peaceful pursuits lies a story of immense personal trials and triumphs.
My healthcare journey began with a sudden medical emergency that changed the course of my life. At 19, I found myself in excruciating pain, leading to an emergency surgery at a teaching hospital in Virginia. The doctors acted quickly, but the aftermath of this initial surgery brought unforeseen complications and subsequent operations. This traumatic medical experience not only affected me physically but also emotionally, as it robbed me of the ability to become a biological mother. This revelation would profoundly impact me for years to come.
I have always been the one to help when it was needed, caring for my family, my mother, especially my brother, who had been diagnosed with diabetes and later stage four breast cancer. My brother, who had intellectual challenges, heavily depended on me and our mother for support. Managing his diabetes had been a longstanding concern, and when his medical team started discussing dialysis, I took on the responsibility of guiding him through this complicated healthcare journey.
Balancing my role as a personal care assistant with the demands of my brother’s medical needs took incredible strength and dedication. I juggled numerous appointments, from nephrology to oncology, ensuring my brother received the best care. The financial strain of frequent travel, hospital visits, and special dietary needs added to the burden, but I never wavered in my commitment.
Facing these challenges, the journey became even more demanding when my brother’s condition required both dialysis and chemotherapy. I faced an unresponsive healthcare system, where a new nephrologist failed to communicate effectively, causing significant stress, and hindering my brother’s treatment. I confronted the nephrologist directly, demanding the attention and care my brother deserved.
Unfortunately, as my brother’s health deteriorated, he was admitted to a rehabilitation center where the quality of care worsened. He developed severe wounds on his heels that never healed. This marked the beginning of his decline, and I was left to navigate these final, painful stages of his illness.
I keenly felt the lack of support and resources, despite being a minister who often provided spiritual guidance to others. This experience motivated me to seek organizations that could offer support and advocacy. In 2016, I joined the Health Quality Innovators Patient Family Advisory Council. My involvement expanded to include the National Quality Forum Consumer Stakeholder Advisory Council and PFCC Partners Advisory Council. In 2023, I graduated from the Patient Program, solidifying my commitment to being a voice for the voiceless.
My passion for advocacy is rooted in my belief in the significance of having someone by the patient’s side to help them navigate medical terminology and offer emotional support. I am committed to ensuring that no one feels isolated during their most vulnerable moments, aiming to educate patients on effectively communicating their pain and needs to their medical teams.
Dorothy Winningham’s story is one of remarkable strength and compassion. Her journey, shaped by personal loss and professional dedication, emphasizes the importance of patient advocacy and the necessity for systemic healthcare reform. Dorothy continues to motivate and empower others through her efforts, transforming her hardships into a positive force for good.
