Columns

In July 2015, I decided to take on a second job to earn some extra income. After applying and being hired on the spot, I went to the job site to discuss my schedule with the supervisor, Daniel. Although I had never met or spoken to him before, I felt…

Fezzy Wezzy is a cute little kitten. Fezzy Wezzy is as soft as a mitten. Festus’ claws, however, will tear you to shreds. Festus “Fezzy Wezzy” naps with his paw in his owner’s palm. (Photo by Kalyn Shelton) One-year-old Festus “Fezzy Wezzy” is as soft as a brand-new pair…

One of my greatest heroes and mentors has always been my dad. Sadly, we are coming up on the first anniversary of his death, and I keep catching myself talking to him in my head. He was amazing, not in a loud way, but in a beautiful, quiet way. I…

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,…