The Hyper IgM Foundation Blog

Episode 003:  – Josh:

In episode 3 of our Patient Voices Hyper IgM Podcast, Ezra talks with 16-year-old Josh Brown from the U.K. Like Ezra, Josh underwent a transplant at a very young age after being diagnosed with X-linked Hyper IgM Syndrome. While Josh is now considered cured of his primary immune deficiency, he was diagnosed with a very rare form of kidney cancer at age 6, most likely due to the conditioning protocol used during his bone marrow transplant. Fortunately, the cancer was caught early and surgically removed.

In this episode, Ezra and Josh explore new territory for our podcast by discussing the mental health challenges of living with these rare diseases and the intense treatments they require. Josh loves playing video games, programming, and spending time with his family.  

All our previous episodes are below and on our Hyper IgM Podcast YouTube Channel. An audio version of the podcast can be found on Apple, Spotify, or wherever you get your podcasts. Please don’t forget to subscribe and share. Enjoy!

Subscribe today to our Podcast YouTube Channel or follow the audio version of the Podcast on Spotify, Apple, or wherever you get your podcasts! 

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.