One Thousand Flaming Swords — Claire Richmond

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.

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…

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.

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,…

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…

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…

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…

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…

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…

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…

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…

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.