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My brother, Jake, has acute intermittent porphyria (AIP). But he’s in denial. “Doesn’t everyone’s stomach hurt when they miss a meal?” he asked me one day over the phone. No. Another time he admitted feeling frequent bouts of nausea. “It’s the worst at night. I always thought it was…

My urine turns a reddish shade of purple when I’m sick. It resembles pomegranate juice, lightly staining the toilet bowl with a ring of fuchsia. This is a symptom unique to acute intermittent porphyria (AIP). The word “porphyria” is even derived from the ancient Greek word…

A few weeks ago, I received Panhematin (hemin for injection) at the infusion center for treatment of my acute hepatic porphyria (AHP), then drove straight to a protest at the Iowa State Capitol in Des Moines. I hooked a rainbow tie-dye face mask behind my ears and…

“Start where you are. Use what you have. Do what you can.” The words of that popular quote, which has several variations, echo a powerful sentiment that resonates especially well within the rare disease community. As we approach Rare Disease Day on Feb. 29, which falls on…

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…

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…

My days often start with a short, guided meditation. With a brain that’s always on the go — making plans, moving forward, synapses constantly firing — starting with a few minutes of calm helps me set an intention and tone for the day. Today, my intention is gratitude. I’m especially…

I tucked my head against a gust of winter, and followed my partner, Michael, toward a brightly lit bakery teeming with strudel, croissants, and Dutch letters. Inside, I pointed at cookies under a glass case and watched as a woman in an apron delicately placed my selections into a white…

I stood in front of the bathroom mirror long enough to see the pair of eyes peering back at me, and they looked exhausted. After nearly two weeks in the hospital with horrific pain, a paralyzed digestive tract, and mysterious autonomic dysfunction, my body was deflated. Translucent…

Life’s like a pickup basketball game — you never know when a twist or turn might change everything. That’s the lesson we learned a couple of weeks ago with my son Brady, a freshman at Syracuse University who navigates life with erythropoietic protoporphyria (EPP), a rare condition that’s always…