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Podcast: It Happened To Me: A Rare Disease and Medical Challenges Podcast
Episode: #57 APOL1-Mediated FSGS: What Families Need to Know, from Diagnosis to Advocacy
Description: Jaime Albright Henighan shares her family’s journey after two of her sons, Joshua and Jorden, were diagnosed with a rare genetic kidney disease called APOL1-mediated FSGS (Focal Segmental Glomerulosclerosis).
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Jaime’s story highlights the importance of early detection, education, and advocacy for families navigating this challenging condition. She discusses her partnership with Nephcure, a patient advocacy organization, and her mission to raise awareness about FSGS, especially among individuals of West African descent, who are at higher risk due to the APOL1 gene mutation.
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Topics Covered:
What is FSGS?: Unders...