A living history project for adults with PKU

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

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

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

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

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

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

Kelsey, born 1992

PKU does not define me but PKU has molded me into the adult I've become. Growing up with PKU taught me accept my differences early on. I couldn't eat the…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

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

Karan

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