Meet Mariana, AIP Warrior
My Purple Story: How I Grew Wings
By Mariana Yepes
“It was like my body waging a war against time, a fire that spread relentlessly”
-Mariana, AIP patient.
Ten years ago, a sharp pain in my abdomen marked the beginning of a journey that would change my life forever. This was no passing discomfort—it was my body waging a war against time, a fire that spread relentlessly, weakening me until I lost control of my own limbs. Each new, inexplicable symptom felt like a cruel anatomy lesson, as if life itself were trying to escape my body.
I searched for answers but found only closed doors. Hospitals became mazes of misdiagnoses, where my pain was dismissed as imaginary—a cry for attention rather than the desperate plea for help that it was. Those who should have been my refuge doubted the reality of my suffering.
“The Purple Witch, my invisible companion, would be part of my journey forever.”
-Mariana, AIP patient.
Those were dark days—endless hospital rooms, intensive therapies, and ICU stays—a limbo between disbelief and despair. Until an angel in the form of a neurologist, who spent just ten minutes with me, changed everything: "It could be Porphyria," he said. And with that strange, unfamiliar word, a door opened. My pain wasn’t imaginary—it was real. The Purple Witch, my invisible companion, would be part of my journey forever.
Over time, I learned I couldn’t fight her. Instead, I had to face her, know her, even embrace her. I photographed my journey, wrote about my wounds, and built bridges to my own heart. I learned that prevention would be my ally, knowledge my armor, and self-care not a luxury but a sacred act.
That’s how Alas Púrpuras (Purple Wings) was born—a sanctuary woven from care, support, and light. A place where souls like mine could discover they are more than a diagnosis. For six years, we’ve held workshops on social change communication and art therapy, planting seeds of awareness and hope in everyone who finds us.
Mariana at the hospital.
Alas Púrpuras grew. Today, we are a photo exhibition of lived stories, a scientific paper on the reality of orphan diseases, and a preventive medicine initiative inviting everyone—not just those with Porphyria—to embrace self-care, prevention, and self-love as pillars of a full life.
The most precious lesson? Learning to hold myself, reconcile with my essence, and listen to my body with devotion. Porphyria, that invisible public cage, failed to chain me—instead, it taught me to fly on my own purple wings. Wings that now stretch out to touch hearts, to remind the world that even from pain, hope can bloom.
Mariana’s before and after AIP.
Want to share your story? Contact us at katri@porphyria.org
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