One Thousand Flaming Swords — Claire Richmond

There is a general lack of understanding and awareness when it comes to pain associated with acute porphyria attacks. Porphyria pain is not well defined in research. It’s misunderstood by doctors and industry professionals, and it’s easy to…

In recent years, I’ve overhauled my idea of goal setting. A few years ago, I sat down one January to write my New Year’s resolutions in the midst of having acute porphyria attacks and filling out long-term disability…

Givlaari (givosiran) is the most exciting development in the acute hepatic porphyria (AHP) community since Panhematin (hemin for injection) was approved under the U.S. Orphan Drug Act in 1984. I started treatment earlier this year, and I’m…

The holidays are a tricky time for people living with chronic illnesses like acute hepatic porphyria (AHP). My body doesn’t do well with added stress and anxiety. I spent Thanksgiving in an acute attack, and didn’t handle it…

My neighborhood pharmacy was randomly closed last Friday. Given the amount of medications I use to manage symptoms of acute hepatic porphyria (AHP), I’m well versed on the hours that it is open. Imagine my surprise when I arrived…

My rich and complex history with hormones started at age 15, when I turned to various estrogen and progestin combos to control painful periods. I was experiencing acute hepatic porphyria (AHP) symptoms brought on by my monthly cycle, but…

The presentation began and I found my seat. Looking around the meeting room, I knew that every single person was there because of a shared interest in my rare disease. Mind blown. Thanks to a scholarship from the National…

I have a confession to make. I’ve read the “Twilight” saga. Yes, even the “Eclipse” novella about the newborn vampire army. I’ve watched all of “Buffy the Vampire Slayer,” as well as the spinoff series, “Angel,” and…

The U.S. healthcare system is good at helping people in crisis get over the hump. But what if your disease is chronic? What if your life is the hump? Four years ago, I was diagnosed with acute hepatic…

I had a short-lived, yet severe, acute hepatic porphyria (AHP) attack in mid-September. Like a descending tornado, it came on fast, grew in intensity, and demolished everything in its path. Before surrendering to the funnel’s pull, I had…

I run late. I sleep in. I am a slow processor. I only have so much control over my pain and fatigue day to day, and it’s been like this for years. I am so over feeling guilty about…

Well, I finally did it. I started Givlaari (givosiran). Since my diagnosis in 2017, the development of this new treatment was all anyone in the acute hepatic porphyria (AHP) community could talk about. Finally, here was a…