The conference is over. I’m in my hotel room after the last day of maternal PKU mentor training. My baby is asleep. It is a beautiful night in the beautiful city of Indianapolis. My heart is just filled with gratitude for being able to have this experience. First of all, a huge shout out goes… Continue reading NPKUA Conference
I was so excited when I got an email recently, inviting me to take this survey. This research is being conducted by Denise, a PhD student in Leeds, UK. Denise has PKU and is doing research on diet adherence. Hallelujah! I have written before on how passionate I am about this and how much I feel this needs to… Continue reading Research Survey
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
Is my formula medicine or food? I recently got an email asking for help with motivation to drink the formula, when you don’t “feel the effects.” This caused me to stop and think — how should we be thinking about our formula? Is it like a medicine that makes you feel better like ibuprofin when… Continue reading The Formula Mindset
This is great! This young woman gives a great description of PKU, a condition she has lived with since birth. She asks her mother what it was like to raise two children with PKU.
What they described is exactly how I feel — Having PKU has its challenges, but if you follow the prescribed treatment you will have a normal, wonderful life!