The Hyper IgM Foundation Blog
The Hyper IgM Podcast – Patients Voices! Episode 4: Ezra Talks to Chris
Episode 004: – Chris:
In episode 4 of our Patient Voices Hyper IgM Podcast, Ezra talks with 37-year-old Chris Simpson from Texas. Chris talks about growing up with a primary immune deficiency and spending his childhood in and out of hospitals only to be officially diagnosed with X-Linked Hyper IgM Syndrome by genetic testing a couple of years ago. Chris shares revolutionary info about a new experimental treatment plan for Hyper IgM Syndrome, gene editing, and much more! Enjoy the episode!
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!
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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 16-year-old high school sophomore 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.