Claire hopes speaking her truth builds connections and generates hope. At 32, she was diagnosed with acute hepatic porphyria (AHP) after a 19-year search for answers. As severe, unexplained pain became a focal point of life, she exiled her body to protect her mind. Through laughter and challenges, “One Thousand Flaming Swords” navigates daily life with AHP, as Claire rebuilds the bridge between her physical and mental being.
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…
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,…
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…
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