Your podcast for understanding Paroxysmal Nocturnal Hemoglobinuria. This is PNH explores life with Paroxysmal Nocturnal Hemoglobinuria, a rare and often underrecognized blood disorder. Through conversations with patients, caregivers, and clinicians, each episode reveals what it takes to navigate…
Invisible diseases come with challenges that often also go unseen. How should patients navigate a disease that the rest of the world doesn't even know is there? For Alyce, living with PNH once meant spending up to 20 hours a day on the couch because of overwhelming fatigue. Then she found a path forward, started…
On this episode of This is PNH, hosts Keith and Amy explore the importance of finding support through community, connection, and trusted resources. Michael shares how a delayed diagnosis led him to an online community that changed his life. Nearly 20 years later, he helps lead one of the largest private Facebook…
On this episode, we explore the often invisible burden of living with PNH through a powerful conversation with patient advocate Nicole and PNH specialist Dr. Carlos DeCastro. From crushing fatigue and brain fog to dark urine, blood clots, and the emotional toll of navigating a rare disease, the episode highlights how…
In this debut episode of This is PNH, hosts Amy and Keith are joined by patient Jessi Hackney and Dr. Daniel Winokur to break down Paroxysmal Nocturnal Hemoglobinuria (PNH), a rare blood disease where the immune system mistakenly attacks its own red blood cells. Using a hotel analogy, they explore the science behind…
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