A living history project for adults with PKU

Marissa, born 1997

My name is Marissa, I am 20 years old, and I was diagnosed with Classical PKU at birth. My whole life I have struggled with my diet, my best levels…Read more

Ashton, born 1987

Hi, my name is Ashton! I am 31 and have CPKU. Last year I had my beautiful baby boy, who is PKU free and is a perfectly healthy and happy…Read more

Scottie, born 1974

My name is Scottie Roland, and i have Classic PKU. I was born on May 26, 1974. Im 43 years old. I was diagnosed with PKU at birth. I’m the…Read more

David, born 1959

What does PKU mean to me? To me PKU is all about community. We all consider ourselves one big family. We are a community of patients, Medical prefessionals, advocates, and…Read more

I'm amazed more and more everyday that I am what I call "PKU miracle."

Karan

Do not let anyone tell you once you are off diet that PKU no longer affects your life. It affects me every day.

Penny, born 1971

Millie, born 1991

My PKU story begins on a balmy morning in July of 1991. I was born in the only hospital in Selma, AL on the day my grandfather ("Pappy"), freshly home…Read more

Olivia, born 1991

I was born on a Saturday morning in 1991. Although routine screening had been established for PKU, treatment protocol was not entirely agreed upon as it is today. My poor…Read more