Meet the incredible people who live with porphyria
Meet Jennifer, EPP Warrior
Jennifer’s life took a dramatic turn in 2017 when her EPP worsened, making any kind of light intolerable and forcing her to live in near-total darkness.
Meet Julie, HCP Warrior
Julie has Hereditary Coproporphyria (HCP), a rare genetic disorder that makes her the only diagnosed child under 12.
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.”
Share your story!
Your story has the power to:
Create a sense of belonging and mutual support within the porphyria community
Raise awareness and understanding of porphyria among healthcare providers and the public
Reduce feelings of isolation and challenge the stigma often associated with a porphyria diagnosis
Offer hope, guidance and inspiration who may be facing similar challenges
We’re here to support you in telling your story, in your own voice. Stories will be featured on UPA’s social media channels, website, and in our newsletter.