Meet Estephany, AIP Warrior
By Estephany Escarcena
"There’s something powerful about finally putting a name to what you’re going through. "
-Estephany, AIP patient.
When I was a child, I dreamed of doing something that would make a real difference in people’s lives. Back then, I didn’t know how or when it would happen, or what shape it would take. I just knew I wanted my life to matter beyond myself.
Years later, after a series of confusing symptoms and several visits to hospitals, I came accross a TikTok video from Katri Parra, that video ended up changing everything. It led me to my porphyria diagnosis, a moment that, while scary, also felt like a kind of relief. There’s something powerful about finally putting a name to what you’re going through. It gives you a direction, a sense of control. Sometimes, having an answer (even a tough one) is better than endless uncertainty.
But more significantly, it introduced me to a global community of patients: people who, like me, were navigating a complex and often misunderstood condition. Among them, I found many from Latin America, where the need for resources, support, and connection felt even more urgent.
So many of us were relying on some of the information we could find online, often contradictory, sometimes even harmful. Our most reliable source of knowledge? Ourselves. We shared lessons learned the hard way, experiences from hospital rooms, and moments of fear. But what we needed was something more structured. More visible. More accessible.
“For the first time, I was surrounded by others who actually understood me.”
-Estephany, AIP patient.
When I traveled to Chicago for Porphyria Palooza, I didn’t know what to expect. But the experience was truly life-changing. For the first time, I was surrounded by others who actually understood me. Just by talking to other patients (even if we were from different countries), I knew they had walked a similar path. I met experts who answered my many questions. I laughed. I cried. I felt seen. I felt normal.
But in the middle of that joy and relief, a realization hit me hard: I was incredibly privileged.
Privileged to be able to travel. Privileged to speak a second language that gave me access to doctors, communities, and research. And with that privilege came a responsibility. I couldn’t keep that access to myself. I had to give it back.
That sense of purpose is what brought me to start UPA Latam. Since then, the journey has been truly transformative. I’ve had to learn a lot quickly. And I’m still learning. But every challenge has reinforced why this work matters so deeply.
Estephany in her interview at Noticias Atlantis in Peru.
We’re currently laying the foundation for something meaningful, a space where porphyria patients across Latin America can find not just information, but connection, clarity, and community. One of the first steps we’re taking is the creation of a fully Spanish-language website, built with the resources UPA has generously provided. It’s a small but powerful shift toward accessibility and equity.
We’re also working to raise awareness across the region, with a special focus on one city in Peru where we’ve identified a surprisingly high concentration of patients. Our goal is to reach them, support them, and show them they are not alone.
Estephany and Kristen meeting for the first time in Porphyria Palooza.
And none of this would be possible without the guidance and encouragement of Kristen: a mentor, a supporter, and a dreamer who believes, like I do, that this effort can lead to something meaningful for everyone involved.
It’s still early. But every message from a patient who no longer feels alone, every small breakthrough, every new collaboration, it all feels like a step toward that dream I had as a child, that dream of doing something that matters. And for the first time, I know I’m living it.
Want to share your story? Contact us at katri@porphyria.org
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