Meet Pierre, EPP Warrior
“Things that many people take for granted, spending time outdoors, being out on the water, or simply enjoying a sunny day, came with consequences for me.”
-Pierre, EPP patient.
For most of my life, sunlight was something I feared, not something I could simply enjoy.
I live with erythropoietic protoporphyria (EPP). Even a few minutes in the sun could cause excruciating pain. For decades, I had to carefully plan my life around avoiding daylight and limiting my exposure.
Things that many people take for granted, spending time outdoors, being out on the water, or simply enjoying a sunny day, came with consequences for me.
Today, I am experiencing something I once could hardly imagine.
I can go fishing. I can spend time boating. I can stay outdoors longer. I have even developed my first tan.
“For someone who spent decades fearing sunlight, being able to sit outside and fish is more than just a hobby. It represents a kind of freedom I once could hardly imagine.”
-Pierre, EPP patient.
I can do this because I participated in the AURORA Phase 2 clinical trial of bitopertin, an investigational therapy being studied for EPP. Bitopertin is designed to reduce the production of protoporphyrin, the substance that builds up in EPP and contributes to light-induced pain. After encouraging results from the AURORA trial, the larger APOLLO Phase 3 trial was carried out to evaluate whether bitopertin can meaningfully increase pain-free sunlight exposure for people living with EPP.
Pierre enjoying outdoors.
There is still a road ahead for others with EPP. Bitopertin remains investigational, the FDA review process is ongoing, and research continues to evaluate its benefits and long-term safety. My experience is my own, and it cannot predict how a treatment may work for someone else.
But, when I look at my life today, I see what research can make possible.
For someone who spent decades fearing sunlight, being able to sit outside and fish is more than just a hobby. It represents a kind of freedom I once could hardly imagine.
My story gives me hope for what the future could look like for people living with EPP, a future where sunlight may represent possibility instead of pain, and where our lives can be shaped more by what we want to do than by what this disease allows.
Pierre’s inspiring story with EPP.
Want to share your story? Contact us at katri@porphyria.org
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