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Welcome to GSD & Me

The content of this website is intended for UK patients. Information concerning liver Glycogen Storage Disease management is based upon UK practice. As dietary management may vary in different countries, please speak to your metabolic team at the hospital for individualised advice for your GSD.

Family waving on a beach Family waving on a beach


Exploring new places on a holiday or short break can be done with a liver GSD. To make the most of your time away, it is a good idea to plan your holidays.

It is especially important to know what to do and where to go if you become ill when you are away.

Here are some things to bear in mind at different stages:

Before booking

Ideally discuss your holiday plans with your Specialist Metabolic Team (SMT).

You will find that some destinations might be more suitable than others. Sometimes, a trip to a particular location might simply need extra planning.


If you are travelling overseas, you should obtain a letter from your SMT confirming your name, date of birth and diagnosis.

This should explain the need for any special dietary and/or medical supplies you carry, including your starch.


You might find yourself having to explain your condition to somebody who has never heard of it before. They may not even speak the same language.

It can be helpful to packing a folder which contains all the relevant information on GSD such as:

  • Information on your condition
  • Details of emergency regimen
  • Contact details for the SMT in the UK

Take a look at our printable travel checklist. Remember you may not always have internet access!

Lost luggage

You should split your essential supplies between hand and hold luggage. This gives you extra peace of mind if your hold luggage goes missing.

Ordering in advance

Sometimes it can take time to obtain feed or equipment supplies. So it is best to order adequate supplies well in advance of going away.

Your SMT can help with this. The more notice you give them, the better.

Travel insurance

Book your travel insurance in good time, ideally when you book your holiday.

If you are unfortunate enough to become unwell on holiday, appropriate insurance should help cover you for any expenses.

Printable travel checklist

Even if going on a shorter trip, it pays to carry some snacks with you in case you are delayed.