Summer heat can be extremely challenging for people living with all types of EB and keeping cool is critical. Heat increases the fragility of the skin, new blisters can form because of the heat, loss of body fluid through wound drainage can lead to dehydration and bandages don’t allow the skin to sweat and cool. 

We have put together some suggestions for staying cool in the heat for people living with all types of EB. Many of these suggestions are tips that members have shared with us:

 

Avoiding dehydration & overheating

For people living with EB, it is important to monitor body temperature and stay hydrated during a heatwave as loss of body fluid through wound drainage and wearing bandages can increase the risk of dehydration and overheating.

• Make sure to stay hydrated – keep a jug of water by your bed and another one in the fridge at all times. Ice lollies will also help hydrate.
• Take your (or your child’s) temperature often – we recommend carefully using an ear thermometer, without pulling on the ear. Taking the temperature gently under the armpit is another method, however, it is less accurate.
• Watch for signs of overheating – the NHS website has information about risks such as heatstroke and dehydration in a heatwave and advice on keeping hydrated and ways to keep cool. They also suggest using the free 111 phone and online service for advice if more help is needed.

 

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 to warm skin.
• Use a gel cooling cushion – to find examples try searching online for a ‘chill pillow’ or even puppy cool pads.
• 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. NB- don’t let your feet get too cold and make sure your skin is not in direct contact with ice.
• 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.
• A fan can help you feel cooler by moving the air around you. There are many personal fans on the market that you can carry with you including neck fans.
• Keep a baking tray with a little water in it in front of a fan to maximise the cooling effect remember, don’t direct a fan directly on to your skin as this can make your body think you are cold and then generate heat. 
• You can get spray water cold mist in pharmacies aimed at those going on hot holidays to use when out and about.
• Copy the Wimbledon champions and wrap plastic, bagged up ice cubes in a towel and place around your neck if comfortable for you and no wounds there.
• Make a note of where you can go locally that is air conditioned e.g. the cinema, shopping centre, café or library. Or places that may stay cool such as historic buildings and places of worship.
• Heat rises so if possible stay cool downstairs. Keep windows closed until it is cooler.

 

Podiatry tips

Shoes

Shoes should ideally have the following features: firmness, comfortable fit, appropriate length and width, rounded toe, plenty of room for the toes, flexibility, flat heel, heel support and laces or straps. The upper covering should be leather/fabric mesh to allow air to circulate, rather than plastic or synthetic. Get your shoes properly fitted so that the foot does not slip when walking.

  

Socks

Socks should be selected to improve ventilation. Silver fibred cotton or bamboo socks with simple insoles may be beneficial. These conduct heat away from the feet, reducing sweating and friction and have an additional anti-bacterial action. These socks are available online and via high-street stores.

 

Emollients & moisturisers

Emollients and moisturisers are helpful to prevent and manage hard skin on the feet and hands. Hard skin is due to overloading of the area, so cushioned insoles are useful in the shoe for shock absorption.

 

Cornflour

Healthcare professionals and patients have also reported the benefit of using cornflour on the soles of the feet and in-between the toes to help control excessive moisture and reduce friction. This can help control blistering on a daily basis.

 

Interested in learning more about EB Podiatry?

• Take a look at our 'Foot Care' Clinical Practice Guidelines.

 

DEBRA Grants

If you live with any type of EB, you could apply for a grant for cooling items. To find out more about our support grant eligibility and how to apply, get in touch with your Community Support Manager to discuss your specific needs, or take a look at our support grant FAQs.

 

Contact us

To contact our Community Support & Membership Teams for information and support, call  01344 771961 and select option 1 or email  [email protected].