Every PKU story is different.

The more I learn about PKU, the more I realize that no two people have had the same experience. Because our bodies all react differently to protein and our tolerances change, it’s not an exact science and often feels more like a frustrating bout of trial and error.

Some people remain steadfast and never stray from diet, others live most of their lives without treatment, and many (like myself) fall somewhere in-between—wavering from periods of absolute dedication to irresponsible, uncalculated indulgence.

We all struggle with similar things, all experiment with food as means to stay healthy and dedicated, but each of us own a personal and emotional story tied to our identity as a “Phenylketonuric.”

My story

I am a 32-year-old woman trying to get back “on diet” after over a decade of choosing to eat recklessly. As a child, the low-protein life was easy (my mom did all the work!) She portioned my meals, tallied the protein in everything I ate, and was creative enough to make it all feel almost normal. But in high school and college, social pressures and curiosity got the best of me a­nd a few “cheat meals” turned into a slippery slope. Left to my own devices, I treated food like a recreational drug.

Now, getting back on track is beyond difficult. I’m re-teaching myself a lifetime of information that used to feel like instinct. I struggle daily with balancing healthy habits with the foods I crave, and continue to define what “PKU life” looks like as an adult.

I am in recovery.

But (most days) I am also very happy; I am married, with a good job and a life I love. And thankfully, those achievements have come with a strong dose of motivation to change. I now put in the work that PKU requires and choose to live consciously, eat intentionally and promote my own health and future.

Like so many my age, I’m also ready to be a mom. But my body isn’t. I’m still learning. I’m learning to break bad habits, adopt new routines, and to measure protein with precision. It’s been about three years since I’ve been back “on diet” but I struggle with consist blood results, and though I’ve made recent strides on my “precon” journey, it still feels like a long road.

Funnily enough, my past experiences eating ‘forbidden foods’ now fuel my path forward. I have led an adventurous life, using food as means to explore culture and to celebrate, and I’ve eaten most things people with PKU are told to (and more intelligently, would) avoid. Today, new recipes and kitchen experiments are my passion. And weighing both the value and the regret of my most delicious indiscretions, I vow life with PKU does not have to be one void of flavor.
 

PKU for Life

This blog will be an honest account of my experiences with PKU, past and present. If my stories can dissuade others from making the same mistakes I did or simply give peace of mind to those who are struggling, it will be worth the time and effort. I am proof that there's life and success despite faltering, and I’m an empathetic voice urging others like me to stay strong. 

I have never met another person with PKU, but am thrilled to change that at the 2018 NPKUA Conference in Atlanta. Connecting with so many on social media has completely changed my world.  I’d like this blog to continue to grow those connections and be a place to share, support and learn from each other. With a bit of luck, it may also serve as inspiration to those seeking new recipes or encouragement, and should more selfishly, provide a source of motivation to myself. The PKU community is an invaluable resource.

I have spent years (over a decade!) ignoring my PKU, but that stops now. This diagnosis—this disorder—is not a choice; it’s a fact of life, and something that comes with many benefits and should be celebrated. “PKU for Life” is both my promise to persevere and a reminder of the path to a happy, healthy future.

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