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My Strength Might Inspire You, but I’m a Total Fraud

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…

Unexplained Pain and My 19-year Search for Answers

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…