“The diet is difficult to follow.” “I know I need to drink my formula, but it’s hard.” “I’m so worried my child will feel that he’s different.” “I don’t like my doctor.” “I have really slacked on my diet lately and I feel super guilty.” “PKU foods are so expensive!” “I hate PKU. I wish… Continue reading Emotional Work and PKU
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
TRU: The Real You — Taking Control: What I’ve Learned From Having PKU
One of my best friends has this awesome blog about TRU Beauty to help women and girls come to know their true value and potential. This week she featured an article I wrote about what I’ve learned from having PKU. Check it out and ‘Like’ their facebook page!
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
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