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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…

I’d like to give a shout out to everyone who prioritized nourishing their bodies and minds in 2023. Whatever that might look like for each one of us, let’s all hold our heads high. In the last couple years, the severity of my acute hepatic porphyria (AHP) and related…

I walked across the Court Avenue bridge into downtown Des Moines, Iowa, accompanied by Michael, my spouse. We were greeted by smells of fresh coffee and breakfast sandwiches. It was late October and one of the last outdoor farmers markets of the year. I bought an apple cider in a…

I thought I might never get over the loss I felt upon learning I had acute hepatic porphyria. In my early 30s, I lost my job, my ability to do traditional full-time work, and my medical coverage, and I couldn’t find an in-state provider to take my case. The…

I recently returned from The International Porphyrias Symposium 2023 fueled with energy. The conference, held Oct. 26-29 in Bethesda, Maryland, featured a blend of scientific minds and patient experiences. Every handshake and shared story felt like a collective step forward in understanding the group of genetic disorders known as…