From 15 mins to 8 hours without pain
Before Bitopertin, my life with Erythropoietic Protoporphyria (EPP) was defined by limits and calculated time outside. Every single day revolved around avoiding sunlight, covering up my skin with UV protective clothing, and bracing for pain that most people can’t even begin to understand. The kind of pain that isn’t visible but it feels like my skin is on fire with intense pain along with shooting electrical shocks. It’s like someone is shoving a million needles into my skin and ripping it off. The pain lasts for days and there's not much to decrease it except to sit in a cool, dark room.
I didn’t have the luxury of being spontaneous. Everything had to be planned—what time I would leave the house, where the shade would be, how quickly I could get back inside if I needed to, what outfit to wear that covers everything but doesn’t make me look too weird. Even then, things didn’t always go as planned. Minutes in the sun could cost me hours or days of pain. Sometimes I had to avoid the activity or gathering all together and stay inside.
What people don’t always see is how much EPP takes from you beyond the physical pain. It takes your independence. It takes your freedom. It takes your ability to just exist without thinking. There’s a constant mental weight that comes with it—the anxiety, the hyper-awareness, the fear of getting stuck somewhere without protection. Even everyday things like running errands, going for a walk, or meeting friends outside felt overwhelming. Life wasn’t just restricted—it was controlled.
And then came Bitopertin.
What it gave me is hard to fully put into words, because it wasn’t just a reduction in symptoms—it was a full life of freedom. For the first time, I wasn’t constantly thinking about escape routes from the sun. I wasn’t calculating every movement or questioning every decision to go outside. I could just… go. I could stay outside longer. I could move through my day.
I went from 15 minutes of sun a day with pain to 8 hours pain free.
I could feel a sense of normalcy that I had never experienced before. That kind of freedom is something most people don’t think twice about, but for me, it has been everything.
Bitopertin didn’t just give me more time in the sun—it gave me parts of my life back that I didn’t realize how much I had lost. It gave me confidence to step outside without fear. It gave me independence in my daily life. It gave me the ability to participate more fully in the world around me instead of watching from the sidelines.
When I stand in the sun now, it may look like a small, ordinary moment. But for me, it represents something so much bigger. It represents freedom. It represents relief. It represents years of limitation finally loosening their grip.
This is why access to Bitopertin matters so much. Because no one should have to live a life dictated by fear of something as unavoidable as sunlight. No one should have to shrink their world just to stay safe.
This treatment has changed my life. And there are so many others who deserve that same chance—not just to manage their condition, but to truly live. FDA approve Bitopertin!
