Kevin, born 1980

Kevin, born 1980

Life is much better when you aren’t alone. In the fall of 2011 I was alone in my PKU experience. Growing up in the 80’s in Northern Louisiana, I didn’t…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

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

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
David, born 1959

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
Jace, born 1991

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