Rare diseases are tough to diagnose. But when it comes to acute hepatic porphyria (AHP), diagnosis is on a whole other level. On average, it takes 15 years to receive an AHP diagnosis. This can be due to myriad reasons, including challenges with awareness and identification,…
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 emergency room was busier than I’d ever seen it, and due to severe acute porphyria attacks, I’ve been in that waiting room many times. I couldn’t get comfortable in the hospital-commissioned wheelchair, no matter how I shifted my body. And there were no other places to sit. I…
I live with acute hepatic porphyria (AHP), an inherited metabolic disorder that affects my liver function and my day-to-day life. By the time I got diagnosed with AHP six years ago, everyone in my life knew something was going on. At that point, thanks to a seven-month…
It was warm on an early December afternoon, and the sand on the Florida Panhandle beach was white and so fine it sifted through my toes like flour. I was at the shore with a friend who, like me, lives with acute hepatic porphyria (AHP). While I speak with…
Holiday hacks are tips to make the hustle and bustle of the holiday season easier. I can’t scroll through Instagram or turn on the TV now without coming across them. None mention the added challenge of managing a chronic illness. The first few years I lived with acute hepatic…
From the recliner in the chemotherapy suite, I desperately looked around the room for any place of interest to focus my vision. I needed a distraction from the nurse perched on a stool in front of me, probing my arm for a vein. I was dehydrated from a recent…
Last weekend, we barricaded our street and placed tables with chairs along the curb. The distant smell of hot dogs grilling filled the air as we staked little ghost decorations along the edge of a slope in the front yard, creating a border for a stage. Once the yard games…
My favorite room in our home is the three-seasons front porch. It overlooks the west side of our house, where, this summer, we planted a pollinator garden. Nine months out of the year, this is where you’ll find me writing, meditating, or reading. Lenny will perch on the…
On a sunny day last week, I was grateful for the energy to be able to enjoy an early autumn evening in the backyard. My partner sat in the patio swing and the kids ran around in the grass. I wandered over to our small vegetable patch, where tomato plants…
I’ve heard people describe living with a chronic illness like acute hepatic porphyria (AHP) as a full-time job. But it requires much more than 40 hours a week, Monday through Friday. Between medication schedules, doctor appointments, insurance issues, advocacy work, and the healthy behaviors to prevent flare-ups or…
I was once in the hospital during the holiday season. At that time, I could only receive Panhematin infusions for an acute porphyria attack as an inpatient. I plugged my grandma’s ceramic, tabletop tree in next to the bedside, where its rainbow of colored lights shone brightly. I…
The day of my diagnosis was the first glimpse into my resiliency and willpower. That morning, my doctor called with test results indicating acute hepatic porphyria (AHP). Anger, sadness, fear, and wonder all came crashing into me, knocking me sideways and then completely out of my body. Suspended…
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