One Thousand Flaming Swords — Claire Richmond

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.

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…

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…

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…

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,…

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…

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…