"One Thousand Flaming Swords" – a Column by Claire Richmond

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 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 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 toxic relationships with specialists had left me exhausted, terrified, traumatized. I…