Manage episode 520070896 series 3686757
This episode is incredibly personal for me. Many have heard of sickle cell disease, but few truly understand the daily reality of those who live with it. In this powerful episode, I sit down with my nephew, Frank James, to have an open and honest conversation about his lifelong experience as a "sickle cell warrior."
Frank shares his unfiltered truth with me, starting with a simple explanation of what sickle cell is and what a "sickle cell crisis" actually feels like. He shared the difficult reality that for him, there is "never a day... we're pain-free" and how those with the disease learn to keep their struggles internal.
Our conversation goes far beyond the medical diagnosis to explore the significant social and mental challenges he's faced. We cover:
Medical Prejudice: Frank reveals the "pure prejudice" he's experienced in the ER, where uneducated medical professionals have accused him of "drug seeking" or dismissed his "unbearable" pain simply because he wasn't screaming or visibly bleeding.
Challenging Misconceptions: I've watched him defy limitations his whole life. He talks about everything from playing in a marching band to becoming a "gym rat," and the competitive spirit that drove him to prove he was more than his diagnosis.
Advice for Family & Friends: Frank offers essential advice for loved ones—people like me—on how to be empathetic, understand the "invisible" nature of the disease, and still respect a warrior's need for independence.
I truly believe this episode is an essential listen for anyone seeking to understand chronic illness, patient advocacy, and the profound resilience of the human spirit.
This is part one of our conversation, so be sure to stay tuned for part two next week.
10 episodes