This is PNH

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 groups for people affected by PNH, where patients and caregivers share real experiences, practical advice, and support that only comes from people who truly understand. Leigh Clark of the Aplastic Anemia and MDS International Foundation discusses how patient organizations provide education, advocacy, and reliable resources while helping people navigate common challenges like fatigue, brain fog, anxiety, and the uncertainty that can come with living with a rare disease. Whether you're living with PNH, caring for someone who is, or simply looking for connection, this conversation highlights the power of finding your community. For more information, visit thisispnh.com   Transparency Statement: The This is PNH Podcast is produced by Believe Limited and made possible by Biogen.  The following Biogen-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions. Biogen, is not affiliated with nor endorses any particular organization, and is not responsible for the content of any sites or resources we may link to from this website, and makes no guarantees about the accuracy of the information or the quality of support provided.  

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 symptoms can quietly become "normal" over time. Nicole shares the deeply personal realities of balancing work, relationships, treatment, and financial stress while living with a chronic condition that many people, including patients themselves, struggle to recognize at first. Together, the conversation sheds light on why managing PNH is about more than lab values, it's about reclaiming quality of life and understanding that surviving is not the same as truly living. For more information, visit thisispnh.com Transparency Statement: The This is PNH Podcast is produced by Believe Limited and made possible by Biogen.  The following Biogen-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.

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 hemolysis, the frustrating road to diagnosis, and why rare diseases are so often missed. Jessi shares her personal journey from unexplained symptoms to a life-changing diagnosis, while Dr. Winokur explains the science behind the diagnosis and the outlook for patients diagnosed today. For more information, visit thisispnh.com Transparency Statement: The This is PNH Podcast is produced by Believe Limited and made possible by Apellis Pharmaceuticals.  The following Apellis Pharmaceuticals-supported program is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any medical decisions.