Editor’s note: This column was updated Sept. 15, 2020, to emphasize the individuality of the writer’s personal experience, and now specifies the importance of seeking guidance from medical professionals. When my second port was implanted on the left side of my chest, just above my heart, I decided to give…
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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 a tummy ache, but bullet holes riddled through my mid-section, smoldering…
Acute intermittent porphyria (AIP) doesn’t define who I am, but it does control what I can do. And my tendency is to talk about that. I will voice my daily struggles, reflect on my hospitalizations, and speak up about the permanent nerve damage caused by nearly two decades of…
When Desiree Lyon, founder of the American Porphyria Foundation, described to a doctor her first attack of acute intermittent porphyria (AIP) at the age of 17, she likened it to “a thousand flaming swords” embedded into her abdomen. I think of her words often, as I’ve struggled throughout…
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