One Thousand Flaming Swords — Claire Richmond

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…

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…

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…

Outfit planning has always been an event for me. I think it started with wanting to be just like Melissa Joan Hart’s character in “Clarissa Explains It All.” When the show first aired on Nickelodeon, I was a…

I can describe chronic fatigue, but it’s impossible to understand unless you’ve experienced it. It’s feeling exhausted from your morning shower; it’s falling asleep every time you crack open a book; it’s feeling too weak to pick up the…

I don’t want to brag, but one time I was awake for eight days straight. I was hospitalized with an acute hepatic porphyria (AHP) attack, but didn’t yet have a name for what was going on. To say…

I save nothing. Clothes I no longer wear get piled into a donation bag, regardless of the quality or style. Once full, notebooks full of writing drafts get shredded and recycled. Throw pillows no longer matching the living room…

I was already emotional before I checked in at the nurse’s station. More than a week into a severe acute porphyria attack, I needed urgent hospital intervention. My body was weak and my mind was disoriented. Luckily, the…

I tugged at my biking shorts and unlatched my helmet. My person and I locked up our bicycles outside a trailside brewery and went inside for a drink. Thanks to RAGBRAI, a hugely popular bicycle ride across the…

At some point, it happens to anyone who opens up about a disability or ailment: Someone will spout a wonder cure. Ableist microaggressions are pervasive in a society of quick fixes and pain phobia. I see it everywhere: Minimize…

I met my new primary care physician (PCP) on a frigid winter morning. I sat in the waiting room clutching my partner’s hand, a file folder spread open on my lap like a security blanket. My history of…

I refreshed the Lyft app on my phone as the speakers behind me blared music from the beloved animated classics of my childhood. I eased my body onto a relatively dry strip of concrete and continued my day of…