We interviewed Lucy, who was born in Edinburgh, where she spent the first seven years of her life before moving to Birmingham with her parents. She returned to Scotland to pursue higher education and today she is studying at the University of Dundee for a combined degree in physical geography and environmental science.

Tell us about your childhood, Lucy.

"I grew up knowing that I just can't eat certain foods. As I got older, I got more and more explanation about why. It started with 'You shouldn't eat this protein because it will make you sick', then it became 'You shouldn't eat this because it does this and this is why it's important' and by the time I got to high school, I was told all the scientific reasoning behind it. That's not a universal experience, but it helped me understand why I'm like this, and how to deal with it, which is the most important thing."

"Everyone I knew in Scotland grew up with my protein substitutes. To them, it was just Lucy, it was a part of me. They grew up not knowing anything else about me, and they learned in school that some people have to take protein substitutes, that sometimes it has to be during school hours, and, you know, that you shouldn't be mean about it."

How did PKU affect you at school?

"When we moved to Birmingham, I started at a new school and that's when I really started to notice my condition. It was a very alienating process and for the first time it felt like: 'Oh... There's something wrong with me.' None of my new classmates had ever seen anyone at school use protein substitutes before. The PKU protein supplements of the past were not like today; They didn't have trendy packaging and the composition wasn't as advanced as it is today. We nicknamed it 'concrete' because it looked like wet concrete and also dried like concrete."

"Let's just say the other kids weren't very nice. Sometimes it was thrown into my hair after which it became a kind of cement. I had to cut my hair a few times to get it out. I was bullied because my low-protein bread was too white, because we had to make it by hand from flour made from potato starch. I had a very bad time until I went to sixth grade at another school, where no one cared about what I ate and I built up a nice circle of friends. But all the bullying in high school up to that point caused a lot of food trauma, eating disorders, depression and anxiety, things that unfortunately I still suffer from. It all started with food and I'm still very self-conscious and reluctant to eat in front of people. At the moment , that no longer applies to my parents and maybe four of my friends."

How did you handle your meals as a young PKU?

"When I started learning how to cook for myself in high school and was given more responsibility for my food, my parents decided that now was the time to learn more about my condition. What helped a lot was that my father was a chef. We cooked together and developing those culinary skills changed everything. This way I could make vegetables really tasty and they didn't just have to... taste bad!"

"Because I can only eat fruits and vegetables, it's critical that they taste good. Cooking and baking are still things I love; I don't like food, but I do like to cook. 90% of the things I make, I can't eat, but I love seeing my friends happy with the cakes I've baked for them."

"My diet is much more restricted; I have to weigh almost all my food. The only things I don't have to weigh are fruits and some vegetables, and I drink water or tea. This morning, for example, I had yogurt with some Rice Krispies, to be precise 20 grams of Rice Krispies, which equals 1 gram of protein. Maybe I'll go for lunch, and if I do, it'll probably just be a piece of fruit (that's why meal prep is so important). My dinner will be 240 grams of mashed potatoes, which equals 3 grams of protein, and then some broccoli and mushrooms, which don't need to be weighed."

"I have to take my PKU substitute with every meal, and I definitely notice when I don't. I then become very unmotivated and my experience is that it worsens my depression and anxiety because more phenylalanine gets stuck in my brain. It's not always immediately obvious, but I find myself getting pretty grumpy when I haven't taken my protein substitutes."

"On the one hand, you can say, 'I have this and I'm going to let it limit my life'. Or you can say: 'Yes, I have this, but who cares, I'm going to do what I want anyway. The latter is how I look at it."

You have such an adventurous spirit.

Tell us about your travels to Honduras.

"I went to work in the middle of the rainforest, in Cusuco National Park in Honduras, to do conservation work. I researched habitats by measuring trees, making biodiversity profiles and other things. I also helped with herpetology, which involved studying snakes, amphibians, and lizards, some of which were so cute... "

"But logistically, I had to have a month's worth of supplies, which meant taking everything with me and paying $100 per trip with a huge suitcase full of protein substitutes. The other question was how I would move between the base camp and the satellite camp with all my protein substitutes, but in the end we decided that I would stay in the satellite camp to make it easier."

"One of the many great things about staying there was the experience of picking tropical fruit from a tree, cutting it up with a machete and eating it on the spot, although this has ruined me forever now!"

How do you stay fit?

I have always had a lot of energy. As a child I played sports almost every day: gymnastics, ballet and swimming. I also did trampoline and badminton (not at the same time). I cycled almost everywhere. Fortunately, my parents always encouraged me to do things and have new experiences. In college, before COVID, I played volleyball twice a week and went to the gym."

We've heard that you love medieval improvisational theatre (LARPing), tell us everything!

"I am part of a group that does medieval re-enactments, where we pretend to live in the Middle Ages. I even have medieval linen underwear: cool in the summer and warm in the winter!"

"I fight with a double-handed axe (I named her Matilda). She is real, but blunt and weighs 2.5 kg. I'm one of the stronger contestants, and we choreograph our fights, so we're told, for example, to pick up a certain person and throw them on the ground. Two of us are always the bad guys and we love that because we get to pick up people and 'beat them up', that's so much fun! The events can last a day, a weekend or even a week, so I sometimes have to do some planning for my protein substitutes, and during meals I dive into my tent and eat there."

What is your message to others living with PKU?

"In the end, I have this condition and I have to deal with it as best I can; If I don't, I won't get where I want to be. I want to move to Finland because that's where all the jobs in the environmental field are and I want to do my master's degree in environmental science at the University of Helsinki."

"I want children with PKU not to feel like there's something wrong with them just because they have this condition, and to know that they are still worth something, even if people avoid them. I hope they never have to go down the path I took to get to where I am today and I hope they see that PKU doesn't mean they have to limit themselves. It just means that they have to live a little differently every day"