Columns

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 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)…

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…

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 timid and bookish 7-year-old. Clarissa Darling quickly became a role model.

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 watering can in the garden; it’s feeling more tired after a…

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 it was a nightmare would be cruel, because I would’ve made…

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 aesthetic are given away or carted off to Goodwill. I don’t…

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 direct admission orders from my hematologist allowed me to bypass 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 state of Iowa, a serious biking and bars culture has taken…

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 your pain with this new supplement or eliminate it altogether with…