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
How is everyone’s summer going? Down here in Arizona we are surviving the three digit temperatures by being creative with indoor play (did you know couch cushions can entertain two little girls for hours?) and by going out of town a lot. 🙂 So far we’ve had a family reunion in southern Utah, a California… Continue reading To Indianapolis!
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
Diet compliance: How can we better empower people with PKU to follow the diet and reap the benefits? PKUers Supporting Each Other I think the true mark of accepting a challenge we’ve been given in life is turning around and trying to help others going through the same thing. Put differently, I think one of… Continue reading My Passion
A little about maternal PKU I recently announced to the world (via facebook) that I am pregnant. I am three months along. I wanted to post about this because this is an important topic for phenylketonurics. Some people have asked how being pregnant is affected by PKU. So here’s my answer! The growing fetus receives… Continue reading I’m Pregnant!
Most people have never heard of PKU. Many people are not aware of what phenylalanine is, what normally happens to it in the body, let alone what would happen with an abnormality such as phenylketonuria. So explaining the need for a low-protien diet can sometimes be difficult. After years of explaining this to people in… Continue reading PKU Diet Graphic
Possible bio-medical treatment for PKU Allow me to share something I spent months researching for a paper in English class last semester. Throughout the years since the discovery of PKU there have been efforts to find a way to treat it. So far there is no way to cure this metabolic disorder. The diet offers… Continue reading KUVAN