Video Podcast One in a Million: Blakelee’s Journey w/ Rare Disease & Resilience w/ Dr. Latasha Holt

Описание: In this episode of This Ability Podcast, host Mary Baudoin sits down with Latasha Holt, a mother, educator, and advocate in Acadiana, to share her family’s journey navigating an ultra-rare medical diagnosis. Latasha opens up about her daughter, Blakelee, who is living with isolated (central) adrenal insufficiency—an exceptionally rare condition affecting approximately one in one million individuals—alongside epilepsy. Together, they break down what this diagnosis means medically, how it differs from more commonly known adrenal disorders, and the challenges of receiving answers when no clear triggering event is present.

Latasha also offers an honest look into daily life managing complex medical needs, from medication routines and emergency preparedness to the emotional and psychological realities faced by both parent and child. She reflects on Blakelee’s perspective, the importance of building strong support systems, and the role of advocacy in raising awareness for rare diseases. This conversation highlights resilience, preparedness, and hope—while providing encouragement and practical insight for families navigating similar journeys and for listeners seeking to better understand the lived experience behind rare medical conditions.

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