Meet Melissa, AIP Warrior
Between Violets and Sunflowers: My Life with Porphyria and Endometriosis
By Melissa Atencio
“Pain hasn’t been the end of my story, but the start of a different path—one with pauses, but also with passion.”
-Melissa, AIP patient.
Hi, I’m Mel, and this is my story.
I was just seven years old when pain first whispered through my body—an invisible presence that came to stay. Back then, I believed that growing up would make the pain fade, that becoming an adult meant leaving suffering behind. But over time, I realized something that changed my perspective forever: this pain was part of me. I would have to learn to live with it—not with resignation, but with care.
At nine, with the early arrival of my period, those whispers turned into screams tearing through me. No one had answers. I was just a girl in Medellín, trying to understand why my body hurt so much while the world moved on as if nothing was wrong.
Then, on October 31, 2008, at age 12, I finally got an answer. My pediatrician diagnosed me with porphyria—a strange, unfamiliar word that didn’t seem like it should belong to a child. Yet, the diagnosis didn’t bring immediate relief. I felt like the only person in my city with this rare disease. There were no support networks, no guidance, and even my family, though present, didn’t know how to navigate something so unknown.
“Since then, I’ve lived between violets (like the purple of porphyria) and sunflowers (always seeking light, like my fight against endometriosis).”
-Melissa, AIP patient.
I grew up with pain as a constant companion, learning to adapt at an age when other kids only thought about games and homework. During one severe crisis, the pain stole my mobility, some of my memories, and forced me to relearn basic tasks. That’s when I knew—I would have to care for myself in ways no one teaches you in school. I learned to pause when my body demanded it, to recognize my limits, and to be patient with myself, even when the world expected speed.
At 24, another diagnosis arrived: deep endometriosis. Another name, another challenge, another layer to my story. Since then, I’ve lived between violets (like the purple of porphyria) and sunflowers (always seeking light, like my fight against endometriosis). Sometimes, these conditions push each other toward the edge of unbearable pain—an endometriosis flare can trigger a porphyria attack. It’s a delicate dance that requires attention, care, and deep self-compassion.
Even after years with a diagnosis, I still face moments of medical doubt, ignorance, and lack of empathy. But I’ve also been fortunate to find dedicated doctors and bright souls who remind me I’m not alone.
Melissa and Mariana (Alas Púrpuras)
And despite it all—or perhaps because of it—I love life fiercely. I treasure small moments, genuine connections, soft sunrises, and heart-driven projects. My illness doesn’t define me. Pain hasn’t been the end of my story, but the start of a different path—one with pauses, but also with passion. I keep designing, creating, dreaming.
In 2024, we lost a fellow porphyria patient to medical negligence. She wasn’t the first, but her passing ignited something in me. I couldn’t stay silent anymore. I couldn’t watch more people die in the shadows of ignorance. I turned grief into action.
On this journey, I met another patient—a friend, a sister in porphyria—who shared the same longing in her heart: to bring love, care, and support to others like us. Together, we gave wings to Alas Púrpuras (Purple Wings), a safe space where those living with chronic illnesses—and even those who aren’t—can find wellness, learning, and hope. We created self-care products as reminders that we deserve well-being, that taking care of ourselves is also an act of resistance, of blooming.
Melissa’s before & after.
We want no one else to face a diagnosis alone, the way I did for so many years.
I live between violets and sunflowers, writing my story with hope, purpose, and the certainty that even in pain, we can flourish.
Want to share your story? Contact us at katri@porphyria.org
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