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.