Columns

How one woman with AIP is turning hope into action

“Hope in Action,” the name of this column, stems from a motivating quote I heard early in my advocacy. My son Brady had recently been diagnosed with erythropoietic protoporphyria, a rare disease that impairs his ability to tolerate sun exposure. Hungry for information, I attended a seminar at…

Acute porphyria: When good genes go bad

John Manak, PhD, a professor and human genetics disease expert at the University of Iowa, emailed me to ask if I’d speak to his class about living with acute intermittent porphyria (AIP). The class was called “Good Genes Gone Bad.” Little did I know at the time how much…

Learning to love myself despite chronic porphyria symptoms 

My dog, Lenny, walked alongside me in his red vest, adeptly navigating the display tables heaped with candies. At our neighborhood chocolatier, glistening pink wrappers and crimson hearts had replaced clearanced holiday treats. When we came to the glass case, Lenny patiently settled on his belly while I peered…