Have you dreamt of travelling the world but worried that your diet will hold you back? Well not anymore… our guest blogger Katie Millington finds out more from experienced traveller Jen…

For a lot of us, travelling is a major item on the bucket list that needs to be ticked off as soon as possible. Whether it be travelling around Europe inter-railing, or further away to exotic and unknown places, lots of people (including myself) dream of exploring the world. Of course, there will be concerns… What if I run out of money? How would I carry all my clothes for months in one bag? DOES THE HOSTEL HAVE WIFI?! Yet, for some, the worries of travelling revolve more around how to keep up with a metabolic condition. Being able to find local food to eat, making sure to have our protein substitute, and of course, not eating something we shouldn’t!

Suitcases PKU

So how do we go about doing this? Travelling is a daunting concept as it is, but throwing words like ‘exchanges’ and ‘PKU’ into the mix adds even more worry. Now, as I am finishing my final year of university, the travel bug is slowly making its way into my mind. Visions of sun, sea, monuments, statues, museums, nature, the Outback are dominating my thoughts, much more than my university work should be… oops. But of course, the question of ‘how’ niggles at me whilst making my travelling plans. It’s hard to be spontaneous when travelling with PKU, which is why I felt I needed some guidance in the area. That’s why I met up with Jen. She has travelled to various places, and also has PKU herself. Jen has provided me with so much useful information and has given me the confidence to start fully planning my own trip! Here is a copy of our meeting to hopefully help out any future travellers with PKU as well.

– Hi Jen. Thank you for meeting with me! So, to start off, can you tell me where have you travelled to?

No problem! I have travelled all over really, I have lived in Australia for 3 months, travelled to New Zealand too. I have been on a ’round the world trip’ visiting places such as Figi, Antigua, San Francisco, France and more. I lived in Sydney for those three months. The longest period of time travelling was four months around the world.

How to travel the world with PKU

How would you describe your average daily diet? And did you stick to this diet whilst travelling?

I would describe my daily diet as normally quite strict, but there can be days when ‘extras’ are included into my day, such as biscuits, crisps! I am only on 15 exchanges a day so I would never eat any meat or fish, just snacks and ‘naughty treats’ occasionally. And, yes I stuck to it, as much as I could. I don’t see it as a diet, I just see it as an everyday thing that I have always lived with. I am quite confident with my diet, I don’t feel embarrassed taking my protein substitute in a crowded public place. I would encourage everyone with PKU to take on this mentality whilst travelling, because asking questions and being confident will make the condition so much easier to handle, especially when away. Normally, at every restaurant I managed to find at least chips and vegetables, which although not ideal, is still food! I never went hungry.

– Do you feel like having PKU hindered your travelling at all? If so, elaborate.

Not at all, like I said its part of who I am, and I wouldn’t be me without it. The only time it has ever hindered my journey at all was the dreaded customs! I encountered some trouble, which, with this food condition, is usually expected when travelling to any destination via plane. You definitely need to be well prepared when approaching customs, such as letters from doctors, prescriptions, copies of the supplement itself, and to be aware they may ask you to try some of the supplement, just to check that it isn’t anything illegal.

When I was catching my flight to Australia, I had a change over in Singapore airport for a few hours. Unfortunately, at this point, I was due to take my protein substitute. The prospect of carrying white powder and then continuing to mix it up with water in a public place, let alone an airport, is a risky move! I was worried they would think I was up to no good! So, to cause less alarm, I alerted a member of staff so they knew what I was doing and didn’t attempt to stop or question me in the process. To avoid attention, I was then taken into a side room to take my medication without judgement or worse! It’s definitely better to make others aware of the circumstances in a situation like that; if I were to try and hide taking my medication and do it sneakily, it may have looked like I had something to hide! Just be aware of that in airports, especially in Asia.

Thailand travel the world with PKU

– How did you deal with taking your protein substitute whilst travelling?

I normally take Coolers when I am home as find them easy to manage, but for the ease of travelling, I changed to PKU Express* (a lightweight powder form which was easy to travel with and made up with water). I took this three times a day, two in the morning before going out and seeing the world, and one at night before I went to bed. Whilst I was on a three month trip, I even managed to keep three months’ worth of PKU Express in my hand luggage on the flight! The airlines tried to make me put it in the hold, but you need to be prepared to argue your case. For example, saying, “Can you assure me that I will have it on the other side?” and if they cannot 100% assure you of that, then you have grounds to argue to keep it with you on the plane.

Also, when I lived in Australia for a few months, I managed to be able to have my protein substitute delivered to a friend there before I started travelling. This helped a lot as it was already in the country ready for me to use! There are ways to obtain your medication through a local pharmacy too in Australia, but I should specify that Australia were a lot more lenient than the USA, as different rules apply due to health care and lack of NHS.

-How did you manage your medication with regard to luggage allowance?

My hand luggage was normally around 7-9kg, which tended to contain mainly my protein substitute for the trip, and other normal hand luggage items I guess like a good book. My normal suitcase contained clothes, and regular holiday items. I didn’t need to worry about sacrificing any shoes or clothes for PKU items, as the PKU Express powder is so light it fits easily in my hand luggage without a problem. All of my medication was in my hand luggage and kept with me at ALL times. People will try and tell you to put the bag in the hold, but like I said, you need to put your foot down and say you have to have it with you! I would suggest to potential travellers that you should try to be creative with your choice of packing and medication, for example, delivering it to a friend, and don’t be afraid to ask for more luggage allowance. There are always ways around it, and changing to PKU Express helped me a lot!

Penguins Simon's Bay travel the world with PKU

– Did you feel that there was much choice at restaurants/cafes that fitted into the low protein diet?

I have to admit, Australia has improved its vegetarian options and Gluten Free choices since after 1999 when I first visited there, but it still can be quite limited. It is not really geared towards PKU itself, because vegetarian dishes may still be containing nuts, or seeds, to add in the extra protein. It is very meat and fish based! But saying that, it was never a real issue finding something to eat, and I never found it difficult not being able to eat the meat or fish because I have never had it in my diet anyway. There were also usually little kitchens available in the apartments where we stayed (but not all) which made it easy to cook and prepare my own low protein meals with food bought just from the local supermarket.

– Do you see yourself doing any more travelling in the future?

Definitely. I am sure I will be travelling again at some point, and PKU should never be a reason to hold you back from doing it! I frequently go away with my partner, whether it just be just holiday or travelling. But I have definitely caught the travel bug!

-What advice would you give to me, and to patients with PKU who are looking to travel in the future?

Be organised; organisation and planning is key. You need to know where you’ll be on exactly what day and time to know where you get your medication from, or where your next meal will take place. Planning your route to the very last point is crucial; if you’ve organised well, then nothing can really go too drastically wrong! Go with the right medical advice, and speak to a dietitian first. Know that if you’re stuck you have someone you can call and they can help. My dietitian has contacts around the world, and I’m sure if you speak to yours, you would be able to be in contact with them too! And I really can’t stress this point enough: everybody needs to travel and make amazing memories in beautiful places. Never let PKU hold you back, speak to your dietitian and make it happen. You won’t regret it!

– Jen

New Zealand travel the world with PKU

So, as we can see, Jen has experienced a lot of the world and different cuisines! Her advice has really helped me, so I hope that it has helped some of you as well. Finally, I feel I can start planning my trip to Australia – maybe when I get a little bit more of my university work done first though! I’m sure travelling will be an unforgettable life experience, and now I feel like I have the confidence to do it!


*In the UK other powder protein substitutes include Lophlex powder.