Meet the incredible people who live with porphyria
Meet Elsie, CEP Warrior
Elsie has been living with congenital erythropoietic porphyria (CEP), a rare condition that makes her extremely sensitive to sunlight.
Meet Sean, VP Warrior
After being diagnosed with Variegate Porphyria in 2009, Sean had to forgo the typical path of attending college or working a traditional 9-to-5 job. Despite this, he didn’t let his condition define him.
Meet Mayra, AIP Warrior
At 38, Mayra was diagnosed with acute hepatic porphyria (AHP)—acute intermittent porphyria to be exact—after a 7-year search for answers, near-death experience, and having rebuilt her body from complete paralysis.
Meet Elizabeth, AIP Warrior
“Living with porphyria is truly like living a double life. I love music, dogs, and the outdoors. Since 2019, I have had to get to know a new part of myself, the other me.”