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 ...
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In Episode 3 of our Paitent Voices Hyper IgM Podcast, Josh shares his experience going through transplant and his significant post transplant complications involving a rare form of kidney cancer called Renal Cell Carcinoma (RCC). Josh, 16, lives in the U.K. and enjoys programming and gaming. All of our previous episodes are below and on our Hyper IgM Podcast YouTube Channel. Please don’t forget to subscribe and share. Enjoy!
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. if you enjoy the podcast, please subscribe to our channel and feel free to share with your networks! Hyper IgM Foundation www.hyperigm.org