PKU people profile: we spoke to Ana Rita Marques Pereira, who has PKU and is a 21-year-old theology student at the University of Hamburg
How do you manage PKU? Tell us more about yourself.
"I was born and raised in Hamburg, Germany, but my parents are from Portugal. As for many families, the diagnosis was a huge shock to my parents. In the beginning, they were mainly concerned, because Portuguese culture revolves around food, and especially a lot of meat. But we quickly learned that with the right planning, nothing stands in the way of a healthy and fulfilling life with PKU. At first, we recorded and calculated the smallest details of the protein substitutes, but as we gained confidence, we switched to estimating the nutritional values. That's how I manage my daily protein intake now. I know that every PKU person is different and that it's important to be accurate when you first make changes to your diet, but this has been my experience. I've become very good at estimating lately. The trick is to plan your meals in the morning so you can prepare for lunch and dinner. That way, you won't be tempted to choose something at the last minute because you don't have time or are too hungry. As they say, a little planning can go a long way with PKU."
Tell us about your first trip away from your parents.
"Well, we got the hang of protein replacements quickly, so I went on my first 'kindergarten trip' when I was just three years old. The school went to Duhnen on the North Sea for a week, and I stayed there without my parents. Of course, no trip would have been possible without serious planning and the continued support of my parents, my teacher, my dietician and the youth hostel cook. Everyone did their best to make sure I stayed on a diet. It was a great success, and it gave me the confidence to enjoy travelling with PKU."
"Whether it's a trip, a week-long school exchange to France or just a holiday with family or friends, I can relax and enjoy every minute without worrying."
How do you manage PKU when you travel?
"I believe that if you don't plan, you can only fail. I am infinitely grateful to my family and friends for their love, support and help over the years."
"Discipline and adherence are essential to a healthy PKU diet. From the beginning, my parents taught me which foods were allowed and which were forbidden. There were exceptions, but they were so rare that I don't feel like 'forbidden' foods, because I don't really know what they taste like."
"Even at children's birthday parties, my mother always sent some cake and other treats so that I didn't feel left out. Sometimes my mother's low-protein treats were so delicious that all the other children wanted something too."
Where do you get inspiration from?
"In Germany, we have the 'Nutricia Metabolics Info Magazine', which is very useful, especially for family, friends and acquaintances, because it is full of low-protein recipes, plus tips and tricks. Thanks to the magazine, we were always up to date with the latest news and trends. I was particularly interested in the people and their stories because I felt like I could get to know other people and their PKU lifestyle. Funnily enough, I've always wondered how great it must be to be interviewed for such an article. Now I'm sitting here reporting on my life with PKU to give you an idea of what's possible with PKU. How cool is that?"
