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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…

Blaming COVID-19 was convenient the first two times Michael and I canceled our wedding. For me, it was an easier excuse than the truth. In managing acute hepatic porphyria (AHP), the rituals of life fall away. AHP is a rare, unpredictable disease that produces chronic and…

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…