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