No Sweat? Why the heatwave can be fatal for those affected by rare condition Ectodermal Dysplasia

18/7/2022, 10:35 am

The Ectodermal Dysplasias are genetic disorders affecting the development or function of the teeth, hair, nails and sweat glands. More than 180 different types of Ectodermal Dysplasia (ED) have been identified. 

The ED Society is a charity dedicated to improving the health and well-being of people whose lives are affected by Ectodermal Dysplasia (ED).

One of the main and worrying symptoms of ED is impaired temperature control. Individuals affected by Ectodermal Dysplasia have a reduced ability to sweat due to absent or reduced sweat glands and can therefore overheat at any time of year, either from atmospheric temperatures, exercise, or an impending infection. If not monitored, it can be fatal and result in seizures, or worse, death.

Glorious sunshine and summer days are welcome to many, but for our ED community it is excruciatingly distressing for families and children.

But we can help them to be prepared with our top cooling tips:

• Hand/feet immersion in cold water
• Damp Hats and t-shirts
• Water spray bottles, carry with you to spray and cool down.
• Portable fans
• Cool clothes – wear light-coloured, loose-fitting, open-weave 
clothes - choose cotton.
• Drink water to stay hydrated – always take a refillable thermos 
of cool water with you.
• Cool bandanas/towel – Soak a bandana/towel in water and 
wrap it around the back of your neck. 
• Cool the car down before entering.
• Gallons of water- take bottles of water to outdoor sporting 
events if your child is an athlete. Water can be used to drink, 
soak shirts, or pour on body as needed.
• Cool gel packs – great for putting your feet on, especially for 
children in class at school.

· Consider trying a “chillow” pillow for comfort at night.
• Cool packs in car seats – Use to help keep babies and toddlers 
cool in the car.
• Frozen Hot Water Bottle – great for cooling the bed.
• Freeze a bed sheet - will give instant relief when getting into a 
hot bed at night.

Here at the ED Society, we are inundated with pleas from parents to help their child's school understand the condition and adjustments they can put in place for affected children.

“Because of the overheating, they become lethargic, fatigued and lose concentration,” Diana Perry, CEO of the ED Society, says.

“We have to help parents quite a lot, getting the school to understand the best way to help a child."

“In the summer, they need to move the child away from the window, have fans on in the classroom and in the winter move the child away from a radiator, allow the child to have water all the time, allow them to come in at lunchtime and not have them play outside and generally bring a friend in with them so they’re not on their own."

“We support not singling the child out.”

Whether we continue to have a scorching summer or a typical British summer, it will be hot for everyone who is affected by ED.

“How to stay cool with ED”
CEO Diana Perry
Diana's two sons affected by Ectodermal Dysplasia - Jack and Joe.

Ectodermal Dysplasia can cause overheating and even death in babies, with some doctors failing to recognise it.

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