Helping your social circle understand PKU

Talking about PKU with friends and teachers

It’s worthwhile sharing information about Phenylketonuria (PKU). Good friends will want to understand more about your treatment and be there to provide the support you sometimes need to stay on track. It may be a simple word of encouragement when you find yourself tempted from the diet your dietitian or nutritionist has prepared. Don’t forget they’re also at hand if it’s stronger support that you need.

It’s also good to make friends with someone else with PKU who knows what you’re going through. Chances are, they’ve been experiencing the same and may be able to share some coping strategies.

If you’re starting a new school, your teachers or canteen staff will also need information. 

Download a PKU guide for your teacher

If you’re taking a trip

There’s no reason why you should miss out on anything that’s going at school just because you have PKU. Sports events, days out, trips away: with a little planning you can participate as fully as your friends.

Remember:

• If you’re off on a day trip, pack an ice-pack to keep your special supplement or substitute chilled.
• Find out as much as you can about the place you’ll be visiting. Can you request advance information about the meals?
• Will you be staying in facilities with access to a microwave or fridge to prepare some meals yourself? Will you be able to keep your special supplement or substitute chilled?

Strategies for parties and special occasions

Often, food is the focus of celebrations and the dietary restrictions imposed by PKU can take away some of the pleasure of the occasion. Ask your PKU specialist about treatment options that could help you achieve a more flexible diet. See Shortcuts to success.

There’s no right or wrong way to handle the situation, but events will always run more smoothly if plans are made in advance. Ideas may include making alternative suggestions to foods high in Phe, or offering to make a contribution to the meal yourself.