A Late Diagnosis: Losing My Mom to Rare Disease
Description
At just 19 years old, she lost her mom to Alpha-1 Antitrypsin Deficiency—a rare genetic disorder that went undiagnosed until it was too late. In this episode, she shares what it was like to watch her mom suffer without answers, and how the grief of that experience changed everything: her family, her future, and her sense of self.
She and Heather talk about the ripple effects of rare disease, the deep frustration of medical uncertainty, and how she’s turned her pain into purpose as a nurse. This conversation is a powerful reminder of how devastating it can be when rare disease goes unseen—and how healing begins with telling the truth.
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