Whether you are traveling by car, train, or plane, if you have phenylketonuria (PKU), you will need to plan ahead for your journey. The following are some travel tips to help ensure you and your family have a stress-free trip.

Plan your diet before traveling

Because you rely on a phenylalanine-restricted diet to help prevent disease complications, preparation and planning are of utmost importance. Suggestions include:

• Packing extra low-protein snacks in case of bad traffic or departure delays
• Ensuring you have sufficient meals for the trip so that you don’t have to rely on gas stations or convenience stores along the way
• Having a plan for your first meal upon arrival at your destination
• Taking a protein calculator to help you determine the protein content of unfamiliar food

Make contact before travel

Here are some contacts you should make at least two months before travel:

• Let your healthcare team know where you’re going, and for how long.
• Ask your metabolic dietitian or primary physician for an official letter listing all the products you are taking and why you need them. You will need this for any emergency treatment as well as for international border crossings.
• Ask your primary physician to prescribe additional products you may need, such as your powdered medical food to cover the trip’s duration.
• Get the contact information for the closest hospital to your destination.
• Discuss options for protein substitute deliveries with your delivery provider. These deliveries are usually available to most countries.
• Contact the airline to ask about extra baggage allowances if you are flying to your destination and are not using a delivery service.
• Ask your hotel what food will be available. Many lodges have all-inclusive packages offering plenty of fruit and vegetable options for mealtimes.
• Contact member organizations of the European Society for Phenylketonuria if you’re traveling in Europe. They can provide what’s called an E.S.PKU travel passport, designed to make traveling with PKU easier. The document includes information about the special medical food that you use and a description of PKU in several languages.

Learn useful phrases

Learn and print out useful questions or phrases in the language spoken at your destination that can be shown at restaurants and hotels. Examples that you may wish to translate include “I have a medical condition called phenylketonuria,” and “Because I have a medical condition called phenylketonuria, I am not allowed to eat any products that contain a lot of protein.”

Prepare for illness and other contingencies

If applicable, take extra medication with you just in case. If you’re purchasing medicines abroad, make sure to tell the pharmacist you have PKU. Also, talk to your primary doctor or dietitian for any specific advice.

Try to assess potential difficulties and have a plan in place in case you need to change your destination or hotel. It’s easier to adjust your itinerary if you have a Plan B.

Whatever the situation, don’t hesitate to ask for assistance from staff at hotels, airlines, or other travel destinations.

Last updated: July 30, 2020

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Phenylketonuria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.