“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
“Experience is not what happens to a man. It is what a man does with what happens to him.”
~Aldous Leonard Huxley, Texts and Pretexts, 1932
Do you make yourself a victim of what happens to you? It can be very tempting, but it won’t get you anywhere. The most empowering thing to do with adverse circumstances is to choose to do something positive with the things that are in your control.
This is how I see PKU. There is nothing anyone of us can do about having PKU. But we can choose how we deal with it. We can commit to the diet in order to have a healthy and happy life. We can enjoy the foods we CAN eat. We can be creative with our cooking so we don’t get too bored of repetitive meals. We can try to support and share with others who have the same condition.
What do you do to make PKU a positive experience?
It’s actually pretty cool… “What’s that?” is a question I get a LOT. Whether it’s drinking my medical formula or eating special low-protein pastas or skipping out on pizza (“…you don’t want pizza?”), I’ve often drawn attention to myself at social gatherings. But having different eating habits is something I’ve had to accept. I think… Continue reading Embracing PKU
PKU: An abnormal thing in an otherwise normal picture A couple of summers ago my best friend Kylie needed to do a portrait project for her photography class. She asked me to be her model. I was of course happy to do it! She wanted the theme to have something to do with my PKU.… Continue reading Formula Photo Shoot