“In sickness and in health, until death do us part.” On April 27, 2019, my husband, Daniel, and I made the biggest commitment of our lives. Little did he know that less than two years later, sickness would overpower health. In July 2020, I started experiencing symptoms of acute…

I live with acute hepatic porphyria (AHP), an inherited metabolic disorder that affects my liver function and my day-to-day life. By the time I got diagnosed with AHP six years ago, everyone in my life knew something was going on. At that point, thanks to a seven-month…

It was warm on an early December afternoon, and the sand on the Florida Panhandle beach was white and so fine it sifted through my toes like flour. I was at the shore with a friend who, like me, lives with acute hepatic porphyria (AHP). While I speak with…

When my fiancé, Michael, first asked me out, he never expected to one day be my caregiver. In honor of Valentine’s Day, I dedicate this column to him. Michael is a rock, a support beam holding me up, keeping me steady despite anything acute hepatic porphyria throws my way.

My undiagnosed rare disease sabotaged friendships. For years, I kept my acute hepatic porphyria (AHP) hidden for fear of being viewed as weak or seeking pity. As a result, I showed up in the world as guarded and aloof, shy and uninterested — traits that do not align well…

My fiancé, Michael, is my caregiver. He tends to my needs during acute hepatic porphyria attacks, provides emotional support, and has steady energy that keeps me sane. Last year when he became very ill, I had to take care of him. It was a “Freaky Friday” situation.