Columns

Nearly 17 years ago, when my son Brady was diagnosed with erythropoietic protoporphyria (EPP), I fell to the floor in a puddle of fear. How would my little boy avoid the sun for the rest of his life? There were no easy answers, and there certainly were no easy…

When my son Brady was diagnosed with erythropoietic protoporphyria in 2009, I had no idea that my extended family would grow to include so many people affected by all types of porphyria. Over the years, I’ve learned more than I ever imagined about these diseases, as well as the…

Porphyria attacks can be triggered by a number of factors, which may vary depending on the individual and the type of porphyria. For instance, people with acute hepatic porphyria (AHP) are often advised to avoid alcohol, smoking, physical or emotional stress, and certain medications, which may trigger a life-threatening…

When living with a rare disorder, it is crucial to understand what is happening within your body. This not only allows you to recognize when your symptoms are about to flare, but it can also ensure you get proper and timely treatment. I was diagnosed with porphyria in October…

Sometimes in patient advocacy, a great event means planning everything down to the minute: logistics, panel preparations, seating charts, and more. At other times, I find myself backstage with seven teenagers and wonder, “What was I thinking?” Last month, something truly special happened in Boston. A group of extraordinary young…

Note: This column describes the author’s own experiences with various mental health medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. In July 2020, prior to my diagnosis of acute intermittent porphyria (AIP), I was prescribed Prozac (fluoxetine)…

Growing up, whenever I’d go to the doctor with my mom, she’d inform them that she had porphyria. But even though the condition has affected several generations on her side of the family, and my mom was once hospitalized for more than three months because of a porphyria attack,…

My rare disorder, acute intermittent porphyria (AIP), is pronounced pohr-fear-ee-uh, and it puts fear in my life. In July of 2020, I started having mood swings, severe pain on the right side of my abdomen, and other symptoms. That’s when the fear really started. “What’s wrong with me?”…

Note: This column describes the author’s own experiences with various medications, including Cymbalta (duloxetine) and Abilify (aripiprazole). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve been scatterbrained, so I’m just going to lay this column out how it comes…

The United Porphyrias Association (UPA), where I serve as president, recently asked our community to do something more raw and vulnerable than ever before. For Global Porphyria Day on May 18, we asked: “What does porphyria pain feel like?” And you answered. Goodness, did you answer. It wrenched…