This life-changing drug answered a prayer
FDA approval of Bitopertin is not a want, it is a need.
My name is Jaycie Guetter, I am 28 years old, and I suffer from Erythropoetic Protoporphyria (EPP). Growing up, I have vivid memories of my parents taking our family to the lake or the pool on sunny, summer days and within 10-15 minutes, it resulted in me screaming and crying in pain. My hands, feet, and face would begin to tingle, rash, blister, and severely burn. My mom tried everything; she changed laundry detergents, soaps, shampoos, sunscreens, lotions, etc., until it was finally ruled out that the sun was causing my discomfort. After many tests and doctor visits, I was officially diagnosed with the incurable EPP when I was 6 years old.
“It was difficult to accept that my childhood was not like those around me.”
EPP isn’t just being “allergic to the sun,” as it affects my life in almost everything I do. Although I had/have a wonderful support system through my friends and family, it was difficult to accept that my childhood was not like those around me.
Not being able to participate in outdoor sports, go swimming or boating at the lake, go on vacations without covering up or waiting until nighttime to experience them, drive without UV gloves and long sleeves, go on walks, simply lay out and tan, and missing out on countless events and activities really impacted me as a child. I recall many periods of my life where I felt isolated, embarrassed, depressed, and questioned why I was “chosen” to have EPP. The mental impact EPP has can be just as strong as the physical.
Throughout my teenage years and early twenties, the desire to be “normal” grew stronger and I found myself “braving” the sun. However, I was quickly full of regret as the swelling, burning, and pin-prick sensation would consume my hands, feet, and face. I would have no choice but to lay in a cool, dark room with a fan blowing on me and applying a cold wash cloth on my burns for days. Five to ten minutes in the sun resulted in a week’s worth of excruciating, unbearable pain. I have prayed endlessly for a sense of normality and was finally introduced to the life-altering drug, Bitopertin.
“Five to ten minutes in the sun resulted in a week’s worth of excruciating, unbearable pain.”
Through my doctor, I was granted the opportunity to enter into the clinical drug trial for Bitopertin in Boston, MA. Because of this drug, my life is forever changed. There is no question about it; everybody with EPP HAS to be on this drug. Since being on Bitopertin, I have laid on the beaches of Florida for five days with no reaction, took a week vacation to Mexico, gone swimming and boating at the lake almost every weekend in the summer, entered a sand volleyball league, taken my nephews to the park, and simply have laid out and soaked in the rays. While these all seem like small, every day occurrences, they are everything to me and I will never take them for granted. This life-changing drug is essential to those with EPP; it is an answered prayer. FDA approval of Bitopertin is not a want, it is a need.
-Jaycie Guetter
