How to keep cool with EB in summer

The warmer summer months can be extremely challenging for people living with all types of epidermolysis bullosa (EB) because higher temperatures and heat can increase the fragility of the skin, meaning new blisters can form more easily, and the loss of body fluid through wound drainage can lead to dehydration.

The situation can be made worse because often bandages don’t allow the skin to sweat and cool.

There are however actions that you can take to help keep your skin cooler with EB in the summer. In this section we share tips and advice from DEBRA members and from healthcare professionals around EB heat sensitivity management.

Avoiding heatstroke and dehydration

Tips to help avoid heatstroke and dehydration:

Drink plenty of fluids but avoid alcohol if possible as this dehydrates the body
Avoid being in the sun for long stretches and particularly during the hottest part of the day, which is normally between 11am and 3pm, and seek shade where possible
Keep rooms cool by closing blinds and/or curtains, and keep windows closed until it is cooler
Have cool baths or showers, and splash yourself with cool water
Wear loose fitting lightly coloured clothing, avoid dark colours as they absorb more heat
If you are driving, keep your vehicle well-ventilated, take plenty of water with you and have regular rest breaks
At night keep your sleeping area well-ventilated. Night colling is important as it allows the body to recuperate, which is particularly important for people living with all types of EB

For more tips and advice please visit:

Heatwave: how to cope in hot weather – NHS (www.nhs.uk)

Heat exhaustion and heatstroke – NHS (www.nhs.uk)

Fans and air conditioning

There are many different fans and air conditioning units available that could help keep you cool with EB during periods of warm weather. Below is some general guidance to help you decide which option would be best for you.

Please note that DEBRA UK can offer support grants for specialist items including fans and air conditioning units to help alleviate EB symptoms, for more information please visit support grants for specialist products and equipment to help alleviate EB symptoms or improve quality of life.

Fans

A fan can be a useful device to help you stay cooler and more comfortable during periods of warmer weather and can help alleviate some of the symptoms of EB.

Fans are designed to move air around to make you feel cooler, but they don’t cool the room unless they are positioned to bring cooler air from the outside into the room e.g., in the evening.

Different fans will offer different functionality including fan speed settings, and the type and cost of the fan will likely have an impact on performance with more expensive bladeless fans generally being more efficient, quieter, safer, and easier to clean. Some will also have remote controls and timers which means you can run it for a set period, i.e., just until you fall asleep rather than all night, which saves energy costs.

There are also personal fans available including neck fans that you can carry with when you’re out and about.

Please note, although fans can be beneficial in helping you to stay cool and comfortable, they can cause negative side effects including causing flurries of dust and pollen to make their way into your sinuses, which can be problematic for people with asthma or allergies, and fans that constantly blast air into the face, despite feeling nice and cool, can cause sore throats and dry eyes. Also, if you get too used to being very cool a lot of the time, it can affect your ability to cope in the heat, and you need to be mindful of the cost of running your fan. So, the recommendation is to be sensible in terms of usage.

For recommendations of some of the best fans available at different budgets, please visit:

Air conditioning

Unlike a fan, which moves air around rather than cooling it, an air conditioning unit does cool the air within the room.

Air conditioning units are available either as a fixed or fully installed unit, which should be installed by a registered gas engineer, or a portable unit. Portable units tend to be more popular in the UK than fixed units which are more common in warmer climates.

Fixed air conditioning units bring air into the room from outside and make that air cooler, portable units will take the air from within the room, cool it, and recirculate it, they can also be moved from room to room as required.

For either option to be effective you need to have the right sized unit for the size of room that you are trying to cool, and the windows and doors should be closed.

As with fans, there are pros as well as cons to air conditioning units. Whether they’re fixed or portable, they will help keep you cool in the warmer months, but because they suck moisture out of a room to bring down the humidity and cool it off, this can pull water from your skin, drying it — and you – out, this can of course be beneficial for people with EB but also be mindful that an air conditioner can also dry your eyes, and thus there is the risk of eyes feeling irritated and itchy.

There is also a cost to running an air conditioning unit and they do take up space; even a portable unit is normally the size of an indoor bin.

For an independent view of the pros and cons of air conditioning units, and for recommendations of some of the best portable air conditioning units available at different budgets, please visit:

In this section, other DEBRA UK members share their best EB cooling practices to help you manage your EB in the warmer summer months:

Keeping hydrated:

Try keeping a jug of water by your bed and another one in the fridge. Ice lollies will also help keep you hydrated

Keeping cool:

Keep your moisturiser in the fridge and remember that water-based moisturising creams can be more cooling than oil-based ones, especially if you are applying them to warm skin
Use a gel cooling cushion – find examples on-line
Wear silver-fibred cotton or bamboo socks which conduct heat away from the feet
Wear light, ventilated footwear
Put your feet in a bowl of cold water especially before and after going out walking
Fill a hot water bottle or container wrapped in a tea towel with ice cubes or cold water and cuddle it, or put it on your feet, but don’t let your feet get too cold and make sure your skin is not in direct contact with ice
Copy the tennis champs and wrap plastic bagged ice cubes into a towel and place around your neck if comfortable and you have no wounds
Keep a set of spare underwear in a plastic bag in the fridge – especially socks
Run cold water over pulse points – if the area is free of wounds
Wet a thin scarf or piece of thin cloth and drape it over yourself like a sheet
Keep a baking tray with a little water in it in front of a fan to maximise the cooling effect but remember don’t direct a fan directly onto your skin as this can make your body think you are cold and then generate heat, which you don’t want
You can get a cooling mist spray from pharmacies to give you an instant face and body cooling mist, these are often intended for people going on holiday but are ideal for people with EB too
Heat rises so, if possible, stay downstairs and keep windows closed until it is cooler
Make a note of where you can go nearby that is air conditioned e.g., the cinema, shopping centres, café, or a library. Other places that may stay cool include historic buildings and places of worship.

Absorbing moisture:

Use cornflour on the soles of your feet, in-between toes or in your shoes or socks to help absorb sweat

For more information about staying cool in the heat please contact your GP, EB nurse, or dermatologist, or a member of the DEBRA EB Community Support Team.

If you live with any type of EB, you could apply for a DEBRA UK support grant for specialist EB cooling products, including fans and portable air conditioning units, that could help keep you cool in the heat.

To find out more about our support grant eligibility and how to apply, please contact the DEBRA EB Community Support Team, take a look at our support grant FAQs, or you can call the team direct on 01344 771961 (select option 1) or email communitysupport@debra.org.uk