Author Archives: Claire Richmond

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…

Pain and Me: Defining the Relationship

Pain is a part of life. For me and an estimated 50 million people in the United States, it’s part of daily life. I’ve been in chronic pain since age 13. Its onset was likely due to a variety of factors, including a bad acute hepatic porphyria (AHP)…

An Undiagnosed Diseases Expert Shares Her Perspective

My 19-year journey to an acute hepatic porphyria (AHP) diagnosis was fraught with misdiagnoses and traumatic misunderstandings. Sadly, it is not a unique story within the rare community. This column is dedicated to those with mysterious symptoms, who are in the thick of searching for answers. Don’t…