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…
One Thousand Flaming Swords — Claire Richmond
Claire Richmond was diagnosed with acute intermittent porphyria in 2017 after living with unexplained pain for 19 years. She was 32 years old and quickly learned there’s no guidebook for incorporating a strange rare disease into her life. When she could no longer work full time, she struggled to find her purpose. That’s when she began to write. Claire hopes speaking her truth will build connections and generate hope. She lives in Des Moines, Iowa, with her family and rescue poodle.
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When my acute hepatic porphyria (AHP) diagnosis was still fresh, my missing enzyme was to blame for everything going wrong. I didn’t yet know the timeline of my treatments, or how symptoms would ultimately impact my plans. My heart was an anvil, an impossibly heavy chunk…
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…
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…
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…
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…
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…
One night last week, the late-afternoon spring air hinted of summer, warm enough for me to imagine sitting on a patio with a mocktail. So my partner, Michael, and I layered on active gear, pumped up tires, and fastened our helmets. One of the great joys in our relationship…
Acute hepatic porphyria is characterized by episodes of intense pain and fatigue, and then windows of feeling decent. In the six short years I’ve managed the disease, I’ve noticed that my symptoms come in cycles. I’m currently in a period characterized by prolonged stretches of fatigue. I’ll remember…
I knew I was in rough shape when I opened my eyes to total darkness. My midday nap had bled solidly into the evening. It was the Monday after a weekend spent in Chicago, a five-hour drive away. My partner perched at the foot of the bed, a look…
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