Life as a teen is already busy and demanding—with school, friends, sports, and everything else you’re into. PKU adds even more to your plate. With smart planning and the right approach, you can stay on top of your PKU.
PKU makes it harder for your body to break down Phe. Phe is found in all foods that have natural proteins. This includes meat, dairy, nuts, beans, and lots of other everyday foods.
When Phe levels get high, it becomes harder to focus, remember things, or stay in a good mood. People say it can feel like their brain is in slow motion.
With the right diet, medical food/formula, or medication, most people can reach expert-recommended Phe levels. This can reduce the symptoms of PKU so you can feel more like yourself.
As a teen, you’ll begin to take on a bigger role in managing your PKU. Create routines that work best for you. This will give you more freedom at school, with friends, and anywhere life takes you.
Start learning more about your condition, your diet, and why staying on track matters for your future. Be sure to ask questions at clinic visits—your clinic team wants to partner with you, along with your parents.
Work with your clinic team to set your treatment goals, which can include achieving a target Phe level. Then check in regularly to see your progress and make any adjustments if needed.
Try planning and preparing your own PKU-friendly meals or snacks. The more you practice, the easier it will be to manage PKU when you’re on your own—whether that is at college, at a job, or while traveling.
You’re way more than someone with PKU—you’re an athlete, artist, gamer, or whatever makes you unique. Keep pursuing your interests and goals while working to make your PKU care a natural part of your daily routine.
Being a teen is all about trying new things, making memories, and finding your crew. Most importantly, it means being yourself—PKU and all. Focus on finding the people who get you, and make you feel comfortable being exactly who you are.
Real friends will want to understand what PKU means for you. Start the conversation early—explain the basics of your condition in a casual way, like, “I have this condition called PKU, so I need to be careful about what I eat because it can affect how I feel.”
Most people want to be supportive—they just don’t know how. Let them know what helps you feel included, like giving you a heads up about food at parties or checking in with you if you’re having a hard time with symptoms.
When friends help you make PKU-friendly food, they can see how good your meals actually are, instead of focusing on what you can’t eat. Invite them over to cook your favorite PKU-friendly dish or bake some safe treats.
Some people might ask negative questions, make jokes, or not give you the understanding you deserve. That’s a form of bullying, and it’s totally okay to shut that down. You can explain how you feel, change the subject, or simply walk away. Reach out to a trusted adult, teacher, or counselor for help and support.
Talking to other teens with PKU makes you realize you’re not alone. You can get real advice on topics like navigating friendships and managing treatment. Look for PKU groups or camps in your area, and join online communities that truly understand you.
Start connectingPKU-friendly eating is about avoiding or limiting food high in Phe, such as meat, fish, eggs, nuts, beans, and most grains. You can still enjoy fun and delicious meals while steering clear of these ingredients.
