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
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
Going off diet, getting back on, and why she’s staying there For my first guest post, I am happy to share the inspiring story of Tiffany Partridge. Thank you so much Tiffany for being willing to share! Here is her story in her own words: As far back as I can remember I knew I… Continue reading Tiffany’s Story
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
I love how the internet and social media allows so many of us connect and share our stories and get to know each other. It has made me aware that everyone’s experience with PKU is so different. As someone who has been on diet my whole life, I realize my story may be different than many others, but it’s my story and it’s… Continue reading My PKU Story
Happy Rare Disease Day! I thought today would be a perfect day to write an update about my pregnancy. I am happy to say that the morning sickness phase has passed. I can’t say I had it as bad as other people, but it was unpleasant. I didn’t throw up every morning, I just felt nauseated pretty… Continue reading My Pregnancy So Far
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!