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How to Come Out With Having a Rare Disease

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…

Have You Thanked Your Physicians Lately?

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…

How I Created a Place to Feel Safe When I’m Sick

My favorite room in our home is the three-seasons front porch. It overlooks the west side of our house, where, this summer, we planted a pollinator garden. Nine months out of the year, this is where you’ll find me writing, meditating, or reading. Lenny will perch on the…

The Good Days Between the Hard Ones With Acute Porphyria

I’ve heard people describe living with a chronic illness like acute hepatic porphyria (AHP) as a full-time job. But it requires much more than 40 hours a week, Monday through Friday. Between medication schedules, doctor appointments, insurance issues, advocacy work, and the healthy behaviors to prevent flare-ups or…