This is PNH

BloodStream Media
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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 this condition, often difficult to diagnose and unrecognized for years. The podcast pairs personal stories with expert perspectives on diagnosis and disease management to clarify the challenges and decisions shaping life with PNH, aiming to inform, connect, and empower those living with it, caring for someone who does, or seeking to understand it. This podcast is intended for informational and educational purposes only and is not intended as medical advice. Always talk to your healthcare provider about questions you may have about the disease, its symptoms, and treatment.

Episodes

  1. Oct 21 ·  Video

    Living with an Invisible Illness

    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 treatment, and had a new outlook on life. In this episode of This Is PNH, Alyce, who has lived with PNH for 14 years, and Dr. Al Freedman, a psychologist specializing in rare disease, explore the realities of living with an illness that others can't see. Alyce opens up about the anger, isolation, and shame she experienced after diagnosis, and the turning point that helped her move forward. She shares how she learned to give herself grace and that having a "good day" with PNH doesn't mean the disease is out of the picture. She explains how she made peace with her diagnosis and why making peace doesn't mean accepting symptoms that are running your life. If fatigue or other symptoms are affecting your day-to-day life, that's worth raising with your care team. Dr. Freedman offers perspective on the emotional and social challenges of invisible illness, from knowing when to seek support to finding the confidence to speak up for yourself. Together, they explore what it means to accept your diagnosis while still advocating for the care, support, and life you want. 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.

    Living with an Invisible Illness

  2. Sep 24 ·  Video

    Where Can PNH Patients Find Support?

    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.

    Where Can PNH Patients Find Support?

  3. Jul 21 ·  Video

    Understanding the Burden of PNH

    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.

  4. May 13

    The Road to Diagnosis

    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.

    The Road to Diagnosis
  • 4 Episodes

About

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 this condition, often difficult to diagnose and unrecognized for years. The podcast pairs personal stories with expert perspectives on diagnosis and disease management to clarify the challenges and decisions shaping life with PNH, aiming to inform, connect, and empower those living with it, caring for someone who does, or seeking to understand it. This podcast is intended for informational and educational purposes only and is not intended as medical advice. Always talk to your healthcare provider about questions you may have about the disease, its symptoms, and treatment.

Information

  • Creator
    BloodStream Media
  • Years Active
    2026
  • Episodes
    4
  • Rating
    Clean
  • Copyright
    © 2026
  • Show Website
    This is PNH