The Hyper IgM Foundation Blog
The Hyper IgM Podcast – Patients Voices! Episode 5: Ezra Talks to Dr. Susan Prockop
Episode 005: – Dr. Susan Prockop:
In episode 5 of the Hyper IgM Podcast, we change the focus from patients to doctors with this in depth interview of Dr. Susan Prockop, Program Director, Clinical and Translational Research; Outpatient Clinic Director, Hematopoietic Stem Cell Transplant Program; and Attending Physician, at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. Ezra dives into what makes Hyper IgM Syndrome unique and often challenging to treat, promising new treatment options, and more! A big thank you to Blue Jay Advisory for sponsoring this episode 5! Enjoy the episode!
https://bluejayadvisory.co.uk/
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.