In my last post I shared that I have begun Kuvan treatment. Because some of my audience are people that don’t have PKU and are not familiar with Kuvan, I thought I’d take a minute to explain what Kuvan is and how it works. First, a refresher on PKU I general: in PKU patients, the… Continue reading Kuvan – the what and how
Between my husband’s graduation, a cross-country move and a new PKU treatment, the last few months have been exciting and eventful for me! We have recently moved from our four-year home in Tempe, Arizona to Columbus, Ohio, and it has been quite a journey! In April my husband passed his dissertation defense with flying colors.… Continue reading Huge changes + Kuvan news
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!