Emergency travel with PKU

Emergency travel with PKU

A need to fly around the globe at late notice has me thinking about how people with PKU need to prepare for the unexpected, alongside the challenges of leading an ordinary life with a rare disease. Here are a few tips to be ‘emergency ready’ with PKU.


I strongly urge you to make supplement a priority. An emergency is not the time to be affected by the PKU headache, brain fog, or with PKU shakes and clumsiness. I celebrate the fact that ready-to-drink PKU supplement is popular due to the convenience and ease of taking it .

I have always preferred powdered sachets, despite the need to carry a bottle and a mixer. The main reason for the preference is being able to travel at short notice, and with less anxiety. I write this mid-air on a delayed aircraft which has been rerouted around closed airspace in the Middle East. I don’t know whether we will land in time for me to make my connecting flight. And I am pretty sure my checked bag will not be transferred. This is frustrating. The fact that I have 14 days worth of supplement tucked safely in my carry-on backpack means a missing or delayed bag will not be a disaster for my diet.


I used to panic a great deal about food when travelling. Then I realised that it is possible to get salad & chips almost anywhere. Not an exciting meal, but calories nonetheless. It is also far easier now to find PKU suitable smoothies and fruit on sale in airports. Don’t underestimate how filling a smoothie or soup can be when flying.


Thank heavens for conference swag! If anyone manning the stands at PKU events has wondered if the samples they generously dish out are useful, I assure you they absolutely are. Packed away in my checked baggage are many items which I picked up at the conference or which arrived in sample packs soon after.

I have several meal-sized packets of Promin burger and sausage mix, and one of their pastas. Also in there are Mevalia biscuits and fruit bars (perfect for travelling!). I have an airbnb with a bread maker, so a packet of PKU flour has gone in next to my usual breakfast cereal.

Customs letter

You might wonder how I feel about taking a bag of white powder (flour) through customs? Tucked in with the food in my checked luggage is a letter from my PKU clinic stating that these are foods for a special medical purpose. There is also a copy of this letter with the supplement in my hand luggage, and a third with my insurance and travel documents.

I must shout out to my clinic, who responded within hours to a request for an updated letter. My prescription has changed recently, meaning my current letter was out of date. The speed with which they sent me a new one meant I was able to board the flight with no problems.

Where I need help:

The meals on board my two flights (one 8 hours long, the other 16) will have pushed my protein allowance beyond its limits. Before flying, I signed up for the ‘Asian Vegetarian’ meals. As someone who loves curry, this seemed sensible.

Dinner was a Saag Daal (spinach and chickpea curry) with a side salad of chickpeas and sprouted grain. Not the best. Most of the meals were chickpea-based, or bulked out with rice. I am considering changing to a different vegetarian option for the way home. If anyone has a better tip for an inflight meal more suited to PKU, Please let me know!

What are your tips for travelling with PKU?