It gave me my life back.

“The biggest change is simple: I feel normal. I can go on walks, be outside without fear, and live without constantly explaining myself.”

My name is Brady Wheeden. I am 20 years old, and I have lived with Erythropoietic Protoporphyria (EPP) my entire life. This condition doesn’t just affect your life, it completely changes it and everything that you do.

Before bitopertin, my life was defined by the sun. I could only spend about 5 to 10 minutes outside before I would feel a reaction begin. And when it hit, it wasn’t just discomfort, it felt like my skin was being held up to a burning stove while being stabbed with pins and needles at the same time. It was intense, overwhelming, and something most people could never truly understand.

EPP didn’t just limit me, it controlled me. Everyday things that most people don’t even think twice about, like walking from your car into a store, going to class, or hanging out with friends outside, were major challenges. I had to constantly plan my life around avoiding sunlight. Even making friends in college became difficult because I couldn’t casually walk to class with people or go to outdoor events. I always had to think about where the sun was, how strong it was, and how quickly I needed to get out of it.

“EPP didn’t just limit me, it controlled me.”

One moment that really captures what living with EPP was like happened when I was in 5th grade. During a fire drill, I refused to go outside because I knew the sun would cause a reaction. A substitute teacher yelled at me and told me to either go outside or “stay inside with the fire.” As a child, hearing that was confusing and hurtful. It showed how misunderstood this condition is.

Even playing my favorite sport, baseball, came with a cost. I had to wear long sleeves, gloves on both hands, and a full mask, even in 100-degree heat, just to stand outside. And on top of that, I had to deal with constant questions and jokes about what I was wearing. I just wanted to be normal.

Then everything changed with bitopertin.

Now, I can spend more time in the sun than I can even measure. I’ve been outside for 3 to 4 hours with no issues, and honestly, I still haven’t found my limit. That’s something I never thought I would be able to say.

The biggest change is simple: I feel normal. I can go on walks, be outside without fear, and live without constantly explaining myself. I’ve been able to try new hobbies, spend time with friends outside, and just experience life in a way I never could before.

Before, I was completely limited from sunrise to sunset. Now, I have zero limitations. I can go outside whenever I want, for however long I want. That kind of freedom is something I don’t take for granted.

What might sound small to others feels extraordinary to me. Walking from my car into a grocery store without thinking about it. Sitting in a classroom without worrying about sunlight reflecting off a whiteboard or someone’s laptop onto my skin. These are things most people never even notice, but for me, they represent a completely different life.

Bitopertin didn’t just improve my symptoms, it gave me my life back.

- Brady Wheeden