Twice a Month, Porphyria Cancels My Life
In the early morning hours, my body jarred me awake. Before opening my eyes, I felt the onslaught of symptoms I knew would be coming before I put myself to bed last night. Pain. Not a stomach cramp, not…
One Thousand Flaming Swords — Claire Richmond
Claire Richmond was diagnosed with acute intermittent porphyria in 2017 after living with unexplained pain for 19 years. She was 32 years old and quickly learned there’s no guidebook for incorporating a strange rare disease into her life. When she could no longer work full time, she struggled to find her purpose. That’s when she began to write. Claire hopes speaking her truth will build connections and generate hope. She lives in Des Moines, Iowa, with her family and rescue poodle.
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To move on with chronic illness, I had to process my grief
I thought I might never get over the loss I felt upon learning I had acute hepatic porphyria. In my early 30s, I lost my job, my ability to do traditional full-time work, and my medical coverage, and…
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