My PKU Story — Perfectly PKU

My sister and I when we lived in Luxembourg.

A long time ago, in a far away land, I made my entrance onto this planet. It was a cold, rainy day in May when I was born in Luxembourg. Newborn screening was not required in Luxembourg when I was born so I was very lucky to have it done. I am VERY grateful that I was able to have the newborn screening. I can only imagine how my life would have turned out if I wasn’t treated, or if it was diagnosed later in life.

When my parents were told that I had PKU, the hospital in Luxembourg didn’t know what to do with me. Their solution: send me across the border. Because they didn’t know how to treat PKU, they sent me to a hospital in Heidelberg, Germany that would be able to treat me. Pretty crazy that a whole country didn’t know how to treat PKU, right? (Well to be fair, Luxembourg is pretty small.)

While my family lived in Luxembourg, my PKU was treated in Heidelberg. My family moved back to the US when I was 2 years old. Growing up, I knew I was different because I couldn’t eat the same things as everyone else, but it really didn’t bother me.

I think the first time I ever “explored” away from my diet, was when I was 3 years old. It was the winter, and there had just been a huge snowstorm. Me and my sister were covering pine cones with peanut butter so that we could put them outside for the birds to eat. I knew that peanut butter was bad for me, but being 3 years old, I was curious. My mom left the kitchen for a minute, and I decided to eat a scoop of peanut butter. After taking the bite, I proceeded to run out the kitchen to declare to my mom, “Look, mom! I ate peanut butter and didn’t die!” That was my understanding of my diet at that age. Well, at least I’m not allergic to peanuts, right?

When I was in elementary and middle school, I had a great group of friends and never felt odd because of my PKU. My friends were very open and understanding about how I wasn’t able to eat the same things as them. For pizza day at school, my mom would always make me my own pizza that I could bring on that day. There was no cafeteria at my school, so everyone had to bring their own lunches. I suppose that was helpful in not making me feel like the odd one out. I also remember having a lot of sleepovers with my friends. One day I was making myself a pizza to take with me, but forgot that it was the oven. I probably left it in there over an hour. So when I remembered that I was making pizza, I took it out of the oven, but it was completely black. I wound up just bringing some spaghetti instead.

In regards to school lunches, high school was definitely harder. Now I had to deal with eating in a cafeteria. However, a good amount of people at my school still packed lunches. The problem I’ve always had is that I was terrible at packing school lunches (I still am). In high school, I generally just packed a lot of snack items (like fruit snacks), and would eat more when I would get home around 4pm. Not the greatest eating habits, but that’s what I did.

High school was also when I started to explore away from my diet a bit more. I babysat a lot throughout high school. One time a family I babysat for ordered Domino’s pizza for their kid to eat for dinner. It smelled so good, and I couldn’t resist. But, because I knew that cheese was higher in protein, I took the cheese off and just ate the crust with the sauce. It was a slippery slope from there on out. Pretty soon after, I ate it with the cheese. Throughout high school, I also wasn’t as good about drinking my formula as I should have been, whoops.

PKU food in Ghana! A cucumber and tomato salad.

College was definitely my time “off-diet.” I have never eaten meat, nor do I believe I ever will. But when I was in college, I definitely ate a good amount of pizza, grilled cheese sandwiches, pasta, and for the first time, ate yogurt. For the first two years of college, I hardly ever drank my formula and just sort of ate whatever I felt like trying.

It wasn’t until I studied abroad that I started to work on following my PKU diet a little bit better. I did a very cool study abroad program called Semester at Sea. I knew that traveling with PKU means I don’t always know what food options are available and I might not have a lot of choices. I also knew that since I was going to be sailing on a ship for 3½ months, it would probably be wise to figure out how to bring my formula. I wound up bringing a decent amount of formula with me, which made it through 3 months. Since I wasn’t drinking my formula previously, that was definitely an improvement. I’m happy to say that I have not been off my formula since then.

One of the cooler places I was able to visit on Semester at Sea, the Taj Mahal.

As an adult, I am trying to become more knowledgeable and aware of how PKU affects me. I have zero issues with talking to people about what I can and can’t eat and telling them what PKU is. I find that once it comes up (and let’s be real, it only comes up when I’m eating) people are usually very interested in knowing more about PKU. I’ve only met a total of 2 people who had heard of PKU when I was explaining it to them. The first person was a tour guide I had on a cruise trip. My family and I were on a tour in Croatia and part of the tour included lunch. My mom was talking to our tour guide about what I could eat so that accommodations could be made. As she was explaining what I could and couldn’t eat, our tour guide said, “Oh, does she have Phenylketonuria?” But of course, she used her own language to say the word. However, “phenylketonuria” sounds pretty similar in a lot of languages. The only other person who knew about PKU was a person I met on a trip to London. I was explaining PKU to a group of people I was traveling with, and he said, “Oh, is that PKU?” Of course, my first reaction to both of these encounters was, “OMG! How do you know about PKU?” Turns out, he is an ER nurse, so he had learned about it through his education.

I have lived with PKU for 27 years. As far as I know, I will always have PKU. (Science may change that in the future). I created this blog so I could become more accountable for my own PKU, as well as share my PKU recipes with other PKUers. I really want to become more proactive about how I manage my PKU, and I want to be more involved in the PKU community.

Feel free to leave comments anywhere on my blog, reach out through my contact form, or chat with me on Instagram! I would love to hear more from you guys!

- Meagan