Great news! I have had many parents contact me wanting to meet other PKU families and not knowing where to start. Growing up I went to a clinic at the University of Washington that had monthly meetings with all the parents and PKU patients from a certain age range. We had our blood tests and… Continue reading Kinsights – PKU Parent Support
Dealing with the PKU diet as a family note: this post was originally written for and posted on the Metabolic Disease Foundation’s blog about PKU One of the biggest concerns I have heard when talking to parents of PKU children, is how their child will deal with being different. Today I will share my perspective, writing… Continue reading It is OK to be Different!
Growing up following the PKU diet, you get a lot of questions. You drink a special formula, say ‘no’ to many foods, and often eat different food – and people notice. It can be hard to know how to explain PKU, because it is so rare and it’s unlike any food issue most people have… Continue reading Explaining the PKU Diet
Alissa is a special education teacher, a 5k runner, and a world traveler. She also has classic PKU. Here is her story. What was it like growing up with Classic PKU? Growing up with Classic PKU was just like anyone else growing up, I just ate differently. Classic PKU, my special diet, my formula, and… Continue reading Interview with Alissa Doerner: A Classic PKU Story
I was interviewed recently about life with PKU for this genetic testing website. They published it for National PKU Awareness day. Me You and PKU – Recombine
You can always add more protein to your child’s diet, but cutting back is extremely difficult. I have never eaten a hamburger. Ever. In my life. It’s true! And do you know what? My life is still perfectly alright. Having to follow such a strict diet might seem unimaginable to a parent of a child… Continue reading Why Cheating Is No Favor
A home-made video by a wonderful fellow PKU family I just saw this on my fb newsfeed posted by PKUWorld. I don’t know how to contact these people but if I could I would tell them: You guys are awesome! You are clearly doing a wonderful job with this PKU thing. You have a darling… Continue reading Cooper’s Story