Meet Ashley, EPP Warrior
“The sun was something most people see as warmth and light, for me, it felt like my enemy”
-Ashley, EPP patient.
For years, I lived in pain I couldn’t explain. The sun was something most people see as warmth and light, for me, it felt like my enemy. I spent so much of my life hiding from it, not knowing why. Simple things like walking through a parking lot in summer was excruciatingly painful. The burning was intense and often lasted for days.
It wasn’t until January 2024 that I finally got the answer: Erythropoietic Protoporphyria (EPP), a rare genetic condition that causes severe reactions to sunlight. By the time I was diagnosed, I was in liver failure, spending 64 days in the hospital. Just a few months later, in June 2024, I underwent a life-saving liver transplant, a moment that changed my entire world.
“By the time I was diagnosed, I was in liver failure, spending 64 days in the hospital.”
-Ashley, EPP patient.
Recovery wasn’t easy, but it opened the door to hope. Thanks to treatments, an incredible team of doctors, and the unwavering love and support of my family, I’ve been able to experience things I never thought possible, like feeling the sun on my skin without pain. Every moment outdoors now feels like a gift I’ll never take for granted.
Ashley feeling the sun without pain.
My journey has been one of fear, faith, and fierce determination. I share my story to spread awareness for porphyria, to help others find answers sooner, and to remind anyone fighting their own unseen battle that they’re not alone. If there’s one thing I’ve learned, it’s that even in the darkest times, there’s always light waiting to break through.
Ashley’s inspiring story with EPP.
Want to share your story? Contact us at katri@porphyria.org
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