Columns

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…

Sometimes hope feels heavy. In the past several months, the porphyria community lost several beautiful souls. They were different in age, type of porphyria, and geography, but all were taken too soon. As I sit at my desk at the United Porphyrias Association office (where I serve…

I’m a fifth-generation porphyria warrior, and the generational curse ended with me in February 2021. That month, I had what’s called a bilateral salpingectomy, the surgical removal of my fallopian tubes, to prevent me from getting pregnant. Although it wasn’t an easy decision, it had to be done. In…

Everyone seems so very excited for spring. The birds are chirping, tree buds are sprouting, and the sun hangs hotter and higher in the sky for longer stretches each day. Well, almost everyone. Right on cue, this is when Shadow Jumpers — as we lovingly call our people living…