A Patient’s 22-year Journey to Diagnosis of AHP [transcript][audio]

Guest: Evelyn Jacobucci  

Presenter: Neal Howard

Guest Bio: Evelyn has been living with porphyria for almost 30 years. Her personal experience with this devastating disease, including her difficult 22-year journey to diagnosis, and the significant social and economic impact it’s had on her family and four children causes Evelyn to live with the fear that she has passed this disease on to her kids and keeps a close eye on her teenage daughter for potential symptoms.  

 Segment Overview: Evelyn Jacobucci discusses her 22-year journey to a diagnosis of Acute Hepatic Porphyrias (AHP), a family of rare and life-threatening metabolic disorders that cause incapacitating and potentially fatal attacks for days or weeks at a time.


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