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My youngest son’s journey to a diagnosis of erythropoietic protoporphyria (EPP) in 2009 took a long and winding path that’s familiar to most patients grappling with a rare disease. Yet one distinctive factor compounded this challenge: EPP symptoms are largely invisible to someone unfamiliar with this…

I don’t always know how my body feels upon waking. After acute porphyria symptoms went undiagnosed for years, I grew adept at dissociating from my pain. It’s how I survived. However, one recent morning in Jackson, Wyoming, my body needed no introduction. Like the G-force of an…

The first thing I wanted to do after I learned I had acute hepatic porphyria (AHP) was to find my people. I received my diagnosis at the Mayo Clinic in Rochester, Minnesota, a few hours from my house. I knew my doctors couldn’t name names of other…

“Let’s do the 108 Sun Salutations class on Wednesday morning!” my dear friend Nancie texted me. The special class was scheduled for the day of the summer solstice. My initial reaction was to wonder if she really knew me. After all, I’ve spent a significant part of my personal and…

Michael pulled on a soft green shirt, its fabric thinning and stained with splatters of white paint. It’s part of his “get stuff done” outfit, symbolizing his intentions to get started on the yardwork. I appreciate my partner’s drive for projects, especially the ones I identify and he executes. Last…

I used to be a distance runner. More accurately, I used to be a runner of a very defined distance. For years, I tried completing marathon training schedules, only to top off at about 16 or 17 miles. I could build endurance and strength, but I always seemed to…

In just a few days, our son Brady will be graduating from high school as part of the Class of 2023. It feels as though my heart will be wearing a cap and gown, crossing a stage, and accepting a well-deserved diploma. On a typical day, Brady’s passing wink and…

With the release of Netflix’s “Queen Charlotte: A Bridgerton Story” on May 4, it seems like everyone’s talking about acute porphyria. “Queen Charlotte” explores a queen’s role in supporting a king whose mental illness is a nation’s secret. King George III is known for losing the American colonies…

Many aspects of life with acute hepatic porphyria (AHP) are a difficult adjustment. It was hard to get my diagnosis and accept that I’d have frequent attacks. It was hard to deal with periodic hospitalizations and medical PTSD. But it was only when I realized I…

As the mom of a 17-year-old son with erythropoietic protoporphyria and a staunch advocate for all porphyrias, I am blessed with some unexpected opportunities. These tend to happen in conjunction with international conferences organized to advance porphyria research and therapeutics. A recent trip to South Africa…