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
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!
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
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!
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
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
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
Committing to the diet is difficult, but totally worth it. Sometimes I think of the words of the song Barbra Streisand sings in Yentyl, There Are Moments: There are moments you remember all your life. There are moments you wait for and dream of all your life. This is one of those moments. This past… Continue reading This Is One of Those Moments