Meet Victor, EPP Warrior
“I wish people understood our pain and day-to-day struggles, and the help we need to do simple tasks.”
-Victor A. Mejías, EPP patient.
At just six years old, Victor A. Mejías received a diagnosis that would shape the course of his life: Erythropoietic Protoporphyria (EPP), one of the cutaneous forms of porphyria. What most people consider a normal part of life—sunlight—is something Victor has had to avoid his entire life. The sun, for him, is not warmth or joy. It’s pain. And that pain has changed everything.
“Porphyria has not allowed me to follow my dreams and do the things I want to do,” Victor shares. “I wish people understood our pain and day-to-day struggles, and the help we need to do simple tasks.”
His reality is stark. He often wakes up feeling unrested, still in pain from brief exposures to the sun the day before. From the window of his room, he can see how bright the day is—but brightness is a warning, not an invitation.
“I force myself to push through the emotional and physical pain. I’m not the kind of guy to quit.”
-Victor A. Mejías
Victor describes trying to go about daily life while managing constant phototoxic reactions:
“As I stand at my patio door watching the world outside, I feel the sun start to burn me. I couldn’t stand there for more than 30 seconds before a new reaction started—building on top of the ones I already had.”
With little support from the outside world, Victor has become his own advocate. “I don’t get help for my disorder from anyone,” he says. “So I force myself to push through the emotional and physical pain. I’m not the kind of guy to quit.” Instead of giving in to despair, he gives back to others—mentoring fellow EPP patients and staying active in the porphyria community.
Victor avoiding the sun.
Victor remains hopeful for the future.
“The future for people with porphyria will be epic,” he says with pride. “The freedom they will have is something I’m honored to be a part of—as a mentor and as someone helping pave this path.”
His words are a powerful reminder that living with a rare disease is not just about survival—it’s about building something better for those who come next.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
