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PKU is demanding. Every meal reminds you that you have a serious disease. Every day, you have to think about your choices. And eating a low Phe diet is something you'll do for life.2
It's not just that you have to watch what you eat at every meal. You also may feel like you are always explaining about PKU and your diet to other people. It can be hard to eat out, or at a friend's house, because of all the food you have to avoid.
If that makes you uncomfortable sometimes, you're not alone.
Millions and millions of people have to think before they eat. People with diabetes and heart disease avoid sugars and fats. People with allergies to foods like eggs, nuts or shellfish have to avoid even a few molecules of the proteins that make them react – or even kill them. Lots of people, like vegetarians, or people on a Kosher diet, make choices to avoid certain foods on moral grounds. So, watching your diet every day isn't as unusual as it may sometimes seem.
Because you need a special diet, you'll probably need to learn to make your own foods, at least some of the time. You'll work with your parents and health care team to create a diet that keeps your blood Phe in your target level. That will help keep your brain healthy.1,2
There is a lot of help and many resources out there. Start by reviewing these recipes and tips for Eating Well