Hyper IgM Podcast – Patient Voices

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In the world of rare diseases, amplifying patient voices is crucial for empowering others to make informed treatment decisions and for providing insights to healthcare professionals and researchers about the patient experience and its impact on quality of life. With conditions like Hyper IgM Syndrome, a rare immune deficiency affecting one in a million individuals, the majority of those affected are children. Yet, narratives in the pediatric rare disease realm often stem from the perspectives of parents, medical professionals, or adult survivors.

Breaking this mold, the Hyper IgM Foundation has launched an innovative podcast, where children affected by X-Linked Hyper IgM Syndrome share their own stories. Led by Ezra Fineman, a 15-year-old high school freshman and two-time recipient of a hematopoietic stem cell transplant due to Hyper IgM Syndrome, the podcast offers a fresh format. Here, young patients interview one another, providing intimate and informative conversations about their experiences with Hyper IgM Syndrome and life with a rare disease. This approach offers a unique glimpse into the patient journey from the perspective of pediatric patients themselves.

In the debut episode, Ezra sits down with 11-year-old Idan Zablocki from New York. Idan, diagnosed with X-linked Hyper IgM Syndrome, also known as CD40 Ligand Deficiency, at just 8 months old, faced a life-threatening battle with a rare pneumonia called Pneumocystis jiroveci pneumonia. This fungal infection of the lungs specifically targets individuals with compromised immune systems. Idan underwent two hematopoietic stem cell transplants before the age of 4 and is currently considered cured of his immunodeficiency and Hyper IgM. Residing in NYC with his parents and younger sister, Idan enjoys school, reading, chess, and exploring the outdoors.