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.
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 now five months in. When I reflect on my experience with…
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 well. I sat down for meals with both sides of the…
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 at the drive-thru during normal operating hours, and found it shuttered…
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 it took years to get to the real source of…
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 Organization for Rare Disorders’ Rare Disease Educational Support Program, I…
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 also “True Blood.” When pop culture flipped the vampire trope from…
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 porphyria (AHP). I was in a severe disease state and had…
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 to do something I both hate and dread: bail on loved…
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 it. Before chronic illness, I worked full time as a communications…
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 medication that doesn’t just prevent acute attacks, but may improve chronic…
Get regular updates to your inbox.