Is it easy to grow up with phenylketonuria?

I was recently asked to talk about my childhood, the challenges I had with phenylketonuria and the way my family helped me. This is a rather broad subject and probably that they would be better placed than me to talk about it, but I will try to organize my ideas as best as I can. I was born in 1981 at a time when we were lucky enough to know about phenylketonuria, but where the special products were not very numerous. There were not many formulas available. To my knowledge, there was only one and it took me all my childhood to get used to it… Then they discontinued it and added a taste of vanilla. Just enough for me to take another 2-3 years to get used to it again.

Essentially, I feel like I have spent the first years of my life without cheating and even without wanting to, thanks to my family. My mother was strict with the diet (thankfully) and the other members were well aware of the details of my condition and they all supported and encouraged me. Having special products always at your fingertips was important.

Then school started.

When we come into contact with others, the social aspect comes into play. We meet lots of children and, of course, we want to do what they do. Surprisingly, I managed to stick to my diet relatively well in elementary school, mainly because I was taught to cook very early. I was able to quickly contribute to the preparation of my lunch boxes and I quickly became an excellent cook (which helps a lot all our lives and in different spheres of social activities.)

In high school, things get tough. It’s rebellion! All the types of food look good, we start to go out, again we want to do like the others and (unfortunately) we have money. It’s a pretty dangerous moment. Honestly, I have to say that I could not avoid it. On the other hand, my diet was pretty well respected at home thanks to the sharp eye of my mother, but also because there were always a lot of special products at home and especially because I knew how to cook well!

Today, young people can be better equipped than I was. In addition to discussing with them their diet and hobbies, I recommend showing them very quickly cooking, handling food and demonstrating that being vegetarian is cool! Plus, the wonderful thing nowadays is that there’s a huge panoply of low-protein foods that mimic all kinds of foods.

Growing up with phenylketonuria has not been that bad and it’s even easier today. 🙂

What do you think? What would you recommend to parents of a child with PKU?

~ T