A living history project for adults with PKU

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

Kay, born 1957

PKU is a major part of my life but not all of who I am. Most of what I am now as an adult was formed from being the first…Read more

Melissa, born 1994

My name is Melissa and I was diagnosed with Classical PKU at 2 weeks old. My parents were so good at keeping my levels in range while I was growing…Read more

Jace, born 1991

So my name's Jace I’ve had PKU for almost 27 years now. My brother and I are the second set of twins in the United States to have it. My…Read more

Debra, born 1958

I was finally diagnosed with classical PKU at 2 years and 4 months after showing many symptoms such as head banging , slower to reach my milestones with retreating into…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

Racheal, born 1990

I was diagnosed with PKU from birth I have 2 siblings who don't have PKU so growing up I found it quite hard, I wasn't so bad with the Medicen…Read more

Elizabeth

I didn't know it at the time, but I have been blessed in my PKU journey. I am 30 years old. Growing up, I remember drinking my formula, circle bread…Read more

Dionne, born 1986

For the longest time, I never wanted anyone to know there was something different about me. I lived my PKU world in the dark, in silence, alone. As a child,…Read more

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