Claire hopes speaking her truth builds connections and generates hope. At 32, she was diagnosed with acute hepatic porphyria (AHP) after a 19-year search for answers. As severe, unexplained pain became a focal point of life, she exiled her body to protect her mind. Through laughter and challenges, “One Thousand Flaming Swords” navigates daily life with AHP, as Claire rebuilds the bridge between her physical and mental being.
Earlier this month, I planted rows of seeds. Twice daily, I watered them with a spray bottle. Within five days, bright green, tender stems broke through the earth, unfurling delicate pairs of seed leaves. Now, a tray of zinnia seedlings grow on a sunny windowsill in my dining room.
It was an average, restless morning, when time was meaningless and elusive. With the muted glow of streetlights peeking through the shades, it could’ve just as easily been 1 a.m. as 6 a.m. I wasn’t sure I had made it all the way to sleep. My feet were uncomfortably warm…
Like many with chronic illness, I can function in high pain and with low energy. Living with acute hepatic porphyria (AHP), I’ve grown accustomed to carrying its weight around with me, to showing up in the world as if discomfort and fatigue haven’t colonized in my body. Every…
No matter what, I will always have my girlfriends. Nothing against my incredible soon-to-be husband, Michael, those were simply the sentiments instilled in me by the woman I admire most in the world: my grandma. Now 96, she has modeled all the behaviors of a great friend throughout my life,…
The rare disease community took some serious hits in 2020. Critical clinical trials were halted and orphan drug funding targeted the development of COVID-19 treatments. As an extra slap in the face, legislation supporting telemedicine was approved, after health advocacy groups had called for policies to…
I have to stop beating myself up for being unable to accomplish things my healthy body could. The day I achieved a personal record running a 10K, I couldn’t celebrate because my head was in the hole of a port-a-potty. When I coasted across the finish line on a downhill,…
When my fiancé, Michael, first asked me out, he never expected to one day be my caregiver. In honor of Valentine’s Day, I dedicate this column to him. Michael is a rock, a support beam holding me up, keeping me steady despite anything acute hepatic porphyria throws my way.
I love coffee, but it doesn’t play well with my acute hepatic porphyria (AHP). Caffeine stimulates the central nervous system, and in recent years I’ve grown more sensitive to its effects. My AHP already causes me anxiety, irregular blood pressure, and insomnia, and as much as I may…
My undiagnosed rare disease sabotaged friendships. For years, I kept my acute hepatic porphyria (AHP) hidden for fear of being viewed as weak or seeking pity. As a result, I showed up in the world as guarded and aloof, shy and uninterested — traits that do not align well…
I would rather put on a strong face than admit to anyone the sheer amount of pain I’m enduring. I’m less focused on describing the actual pain at doctors’ appointments. Instead, I distractedly worry about whether I will be believed. I’ll reason with myself, thinking I can deal with these…
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