Author Archives: Claire Richmond

I Will Listen to My Body This Holiday Season

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…

The Effect of the Worker Shortage on My Rare Disease Care

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 Experience Trying Lupron to Treat AHP Attacks

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…

Cutaneous Porphyria and the Vampire Myth

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…

Does My Rare Disease Make Me an Unreliable Friend?

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…

Everything Takes Longer With Chronic Illness

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…

How I Started Taking Givlaari for My Acute Porphyria

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…