I stood in front of the bathroom mirror long enough to see the pair of eyes peering back at me, and they looked exhausted. After nearly two weeks in the hospital with horrific pain, a paralyzed digestive tract, and mysterious autonomic dysfunction, my body was deflated. Translucent…
Life’s like a pickup basketball game — you never know when a twist or turn might change everything. That’s the lesson we learned a couple of weeks ago with my son Brady, a freshman at Syracuse University who navigates life with erythropoietic protoporphyria (EPP), a rare condition that’s always…
I’d like to give a shout out to everyone who prioritized nourishing their bodies and minds in 2023. Whatever that might look like for each one of us, let’s all hold our heads high. In the last couple years, the severity of my acute hepatic porphyria (AHP) and related…
I walked across the Court Avenue bridge into downtown Des Moines, Iowa, accompanied by Michael, my spouse. We were greeted by smells of fresh coffee and breakfast sandwiches. It was late October and one of the last outdoor farmers markets of the year. I bought an apple cider in a…
I thought I might never get over the loss I felt upon learning I had acute hepatic porphyria. In my early 30s, I lost my job, my ability to do traditional full-time work, and my medical coverage, and I couldn’t find an in-state provider to take my case. The…
I recently returned from The International Porphyrias Symposium 2023 fueled with energy. The conference, held Oct. 26-29 in Bethesda, Maryland, featured a blend of scientific minds and patient experiences. Every handshake and shared story felt like a collective step forward in understanding the group of genetic disorders known as…
Every October, the Midwest Alliance for Mindfulness (MAM) hosts a silent retreat in the woods outside of Kansas City, Missouri. For five days, I volunteered not to speak. I knew it would be difficult, but nothing prepared me for what would actually happen. We arrived on Sunday afternoon to…
Acute hepatic porphyria (AHP) symptoms are caused by a specific set of triggers, so early on in my rare disease journey, I used strategic lifestyle adjustments to prevent and predict my attacks. But it wasn’t that easy. The first three years…
The first time I realized I was rare, a doctor at the Mayo Clinic said he’d never seen a test for acute hepatic porphyria (AHP) come back positive. Mayo Clinic was my last hope, the place I went when no one else could help. A medical resident on my…
When my youngest son, Brady, was diagnosed with erythropoietic protoporphyria (EPP) at age 3, it marked the beginning of a long and challenging journey. It had taken countless doctor appointments and a tremendous amount of persistence just to identify the condition. But as a parent and caregiver, I…
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