Growing up following the PKU diet, you get a lot of questions. You drink a special formula, say ‘no’ to many foods, and often eat different food – and people notice.
It can be hard to know how to explain PKU, because it is so rare and it’s unlike any food issue most people have ever heard of. After doing this for over 20 years, here are some thoughts I have. Hope they can help!
Note to parents: I believe it is very important to give your child many chances to explain PKU and their special diet themselves, starting at a young age. It may be easier for you to step in and do it for them, but this deprives them of a valuable opportunity to gain confidence and develop ownership over their diet. That independence will help them to be more consistent with managing the diet on their own, which is what you want!
A good rule of thumb is to keep it short. Then if they want to know more, expound.
You could start with, “I have a rare genetic disorder called PKU and I can’t metabolize protein, so I have to eat a really low-protein diet.”
Sometimes that is enough. Often though, people want to know more about what foods you can and can’t eat, what happens if you eat too much, and how you survive without eating protein.
This is where you might have explain that it’s actually just one amino acid in protein (but it’s in pretty much all food protein) that you can’t process. If you were to eat normal amounts of protein, this amino acid (Phenylalanine) would build up in your blood and cause brain damage. Here is a graphic I made to explain that concept:
This leads in to answering questions about the formula. Many people know enough about nutrition to know that protein is essential to staying alive, and they wonder how you survive with so little protein.
You can tell them, “I drink a special formula every day that has all the amino acids, except Phenylalanine, plus other vitamins and minerals I need.”
For the most part I think your answer will just totally depend on the person asking and their interest level and background.
Other than that, be confident and enjoy being interesting! 🙂
How do you explain PKU?