Tips and advice for travelling with EB

In this section you can find practical advice and tips to prepare you for a safe and comfortable holiday or trip if you, a member your family, or someone you care for, has any form of epidermolysis bullosa (EB).

Local medical services for travellers with EB

If you are travelling anywhere new or unfamiliar it is a good idea to familiarise yourself with the local medical facilities, should you need them during your stay, plus the local public transport options should you need them to be able to get to a clinic, health centre, or hospital.

Emergency identification tips for travellers with EB

When travelling or on holiday, having the ‘I have EB’ card with you and to hand is recommended for any situations where you, or the person you care for with EB, may require healthcare support whilst away. The card will help identify to healthcare professionals less aware of EB, that you or the person that you care for has EB and that additional allowances may be required because of it.

As a DEBRA UK member you can request an ‘I have EB’ card for free. Please email membership@debra.org.uk to request yours. You could also consider having luggage labels that include information about EB, and/or a lanyard with emergency contact details. You can contact us to request an EB medical information card to use in these situations.

To ensure healthcare professionals have the necessary information about children and young people with EB, you can also download and create a Healthcare Passport that can be passed onto any healthcare professional that you interact with. For more information, please read here.

EB isn’t always visible to others and so it can be beneficial to have something on you that helps identify to other people that you have a hidden disability such as the Hidden Disability Sunflower (HDS), which is globally recognised. We have partnered with HDS and are able to offer free to our members a DEBRA co-branded HDS card and HDS lanyard. To request yours, please complete this form.

Request an ID card and/or lanyard

Packing tips for people with EB

To save time whilst you are away and to reduce the risk of contamination, it is recommended to prepare dressings in advance so that when you arrive at your destination you have pre-cut dressings ready to use.

For children with EB, it is also a good idea to take an inflatable bath with you on your travels so that you know you have a safe, comfortable bathing solution, wherever you’re staying.

It is worth considering packing the following items too:

• Taking your own satin sheets will not only prevent introducing new laundry detergents but will also ensure you have sheets that are soft and comfortable.
• Taking your own washing powder could reduce the risk of potential skin irritation from using unfamiliar detergents.
• Taking your own microfibre towels means you will be guaranteed to have towels during your stay that are absorbent, and which will dry quicker than other towel types.

Sun protection for sensitive skin with EB

Our members have recommended using prescription sun creams including UVistat or Ultrasun because they are easier to apply. Ultrasun in particular is recommended due to its thin base.

Certain over-the-counter sun creams are also recommended by our members including Nivea Kids 50+ Spray, which is preferred for children with EB due to its thinner consistency making it easier to apply. If you want an even thinner, more manageable consistency, this can be achieved by mixing it with P20 sun cream. Ultra Mist Sunscreen from Banana Boat has also been recommended by our members.

It is generally recommended to use long-lasting sun creams (16+ hours), because these reduce the frequency of reapplication, to use continuous spray bottles, as these provide a more even application that reduces friction on the skin, and to use a sponge to apply sun cream because this reduces the heat and friction typically caused by direct hand application.

For additional sun protection, some of our members also use UV sleeves and hand protection wear.

Managing dietary needs while travelling with EB

If you are staying at a holiday park or in a hotel where you will have food and drink provided it is always worth contacting them prior to arrival to explain your dietary requirements so you understand what they can and cannot offer, this will help you to plan accordingly.

We know from talking to our members that many of them will take certain food types with them on holiday and, they will pack a blender so that they have peace of mind that if they need to blend any food types, they have the equipment they need to do this.

Further information

Our website has more information that could help you when planning a trip or holiday, including information about insurance and items to take with you.