Epidermolysis bullosa (EB)- how can I keep cool in hot weather?

The heat in the summer can be one of the biggest challenges for people with EB and keeping cool is very important. The heat can increase the fragility of the skin and cause new blisters to form. You can also lose body fluid through ooze or liquid from your wounds, and dressings can make you overheat.

• Water-based moisturisers can be more cooling than oil-based ones. Keep your moisturiser in the fridge to help cool your skin during dressing changes and throughout the day.
• A fan/ air conditioning is a great way of keeping a room cool. Avoid sitting directly in front of them as this can dry your skin.
• Use a gel cooling cushion also known as “chill pillow”.
• Hug a hot water bottle filled with ice cubes or cold water. You can wrap it in a towel to keep yourself dry.
• Put your feet in a container of cold water (make sure your skin doesn’t directly touch ice).
• Go swimming in a pool or the sea. This will keep you cool and can help keep your wounds clean.
• Make a list of places with air conditioning that you’d enjoy visiting if it gets too hot e.g., shopping centres, museums, and cinemas.

• Wear soft open shoes like sliders to reduce the amount your feet sweat and keep them cool.
• Try gel cooling insoles to help stop your feet overheating.
• Salt soak your feet. This can help reduce irritation and help to remove dead skin if you have blistering.
• Wear silver cotton socks to help conduct heat away from the feet and reduce sweating. These socks are available online and in high street stores.
• Use cornflour or liquid talc on the soles of your feet and toes to help control excessive sweat and reduce friction. This can help to reduce blistering.

Ooze or liquid from your wounds can make you lose additional body fluid and dressings can increase your risk of overheating. It’s important your parent or carer regularly checks your body temperature, and you make sure you’re drinking enough water when it’s hot.

• Drink plenty of water throughout the day. Keep a bottle of water with you to avoid getting thirsty.
• If you have a gastrostomy, make sure you are having regular top ups with water to make sure you’re getting enough fluid.
• Spend time in the shade when the sun is at its strongest. In the UK this is between 11am and 3pm, March to October.

MyGOSH (for non-urgent queries)

Telephone: 0207 405 9200 Ext 7808/5053

Email: gos-tr.ebnurses@nhs.net