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I lived with my rare disease for 19 years before finding answers. The first time I was hospitalized for an acute hepatic porphyria (AHP) attack, I was 32 and undiagnosed. Within 24 hours of admission, the floral arrangements began to arrive. Outpourings of generosity and concern came from…

Growing up, I loved playing bingo with both of my grandmas. The large hall held rows of tables filled with players trying their luck. I would eagerly play a couple of cards while each of my grandmas somehow managed to stay on top of dozens of them while simultaneously chatting…

Disclaimer: The opinions in this column are my own. The decision to have children is deeply personal and isn’t universally right or wrong.  I am 38 and choose not to have babies because of a burdensome rare disease. I’ve decided not to risk the 50% chance of passing on a…

Last weekend, we welcomed the expert physicians and researchers of the Porphyrias Consortium to the United Porphyrias Association‘s home base in Bethesda, Maryland, with the goal of networking and brainstorming about how to move porphyria research and knowledge forward. The event marked the first in-person meeting of this…

When it comes to treating porphyria symptoms, there are more options than prescription medication alone. Just about every patient I know who’s managed an active disease state for any length of time has a recipe of wellness-based and self-help practices to cope with pain and stress. Mine includes daily…

My 16-year-old son Brady agreed to pop on a #PorphyriaTogether T-shirt and pose with Mom for last Friday’s #PurpleForPorphyria global event in honor of Porphyria Awareness Week 2022. I am a happy mom anytime he cozies up to me. The resulting image took my breath away. Staring at me…

All types of porphyria share a hallmark symptom: horrific pain. For many of us, our illness is largely invisible. For some of us, it becomes a nearly insurmountable obstacle that dictates our lives. While I would never wish porphyria on another human, I frequently find myself wanting my loved…

Named from the ancient Greek word “porphura,” which means purple, the group of diseases called porphyria often is identified by that same color, according to Scientific American. Today, purple helps to unite members of the porphyria community. This week, you’ll find me gathering my purple gear in anticipation of…

Acute hepatic porphyria (AHP) is a complex rare disease that takes up a lot of brain space. Nothing is more exciting than when I can tell someone who actually understands it about how it feels, acts, and responds. Venting and story sharing are one thing. Living in perpetual…

With spring upon us, the birds are singing earlier in the morning. The flowers and trees will soon bud. Our clocks have already “sprung” forward. The air is warm, and the sun shines brighter and longer than it has in months. But for some, the signs of spring…