Meet Cheyenne, EPP Warrior
“A reaction for me felt like burning while my skin was being pricked with thousands of tiny needles.”
-Cheyenne, EPP patient.
My name is Cheyenne, and I live with Erythropoietic Protoporphyria (EPP). For most of my life, the sun wasn’t something I could enjoy, it was something to fear.
Before bitopertin, I could only spend 30 minutes in the sun before receiving early warning symptoms such as tingling. A reaction for me felt like burning while my skin was being pricked with thousands of tiny needles.
“As I got older I began to stop accepting my life in the shadows and went out in the sun regardless of the pain”
-Cheyenne, EPP patient.
EPP stopped me from doing many things. It stopped me from doing sports, from going to pool parties, from simply enjoying Fourth of July cookouts and Memorial Day bonfires.
As I got older I was less willing to accept life in the shadows and went out in the sun regardless of the pain. I faced the consequences of my actions but at least I was in the pictures at the water park, I was there during that cookout, I was there during that birthday party, and that was a good enough reason to deal with the pain for me.
It’s hard for others to understand how in the dark you are about what might seem like common knowledge. When I was first able to go into the sun for more than an hour and felt my skin get warm from the rays of the sun, I was confused- I didn’t know skin got warm without pain like that.
Cheyenne with UPA’s mascot, Porphy.
Now that I’m on bitopertin, my life is incredible. I got my first ever sunburn on my face, I was able to tan for the first time and I am able to go hours on end without pain. The most important thing bitopertin has given me, was a sense of ability with no pain. I no longer fear missing out, or seeming like I was never there during trips, or seeming like I wasn’t present at family events. I can be there now without pain or fear, and that’s something no one seems to consider when I speak about my disease.
Though it is still a bit cloudy out where I am, I’ve already done things I’ve dreamed of doing. Getting something small like a sunburn sounds like a nuisance to others, but it’s freedom to me.
Cheyenne’s inspiring story with EPP.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
