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Another common feature of Ectodermal Dysplasia 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 (metabolic heat) or an impending infection. This can be dangerous particularly to the very young. There can also be problems in maintaining an adequate body temperature in the winter months, i.e. the affected person gets too cold and has difficulty warming up. Whether overheating (hyperthermia) or over-cooling (hypothermia), they may become tired, lethargic, appear to be in a dream, unable to concentrate or listen, feel nauseous, have a headache, become irritable, disruptive or uncooperative. Therefore, they must be cooled down or warmed up. When overheating one sign for some individuals is that their ears go very red whilst the body remains pale. As your child gets older the symptoms become easier to manage and they can begin to take control themselves, although the difficulties will never go away.

Professor Mike Tipton, of Human & Applied Physiology, and member of the ED Society Medical Advisory Board, shares some of his top tips on how to help those with Ectodermal Dysplasia stay safe in the summer.

A child affected by Ectodermal Dysplasia may refuse to go outside in the sunshine or insist on going to the bathroom numerous times a day. They may not be behaving awkwardly or trying to get out of doing something. Rather, they may instead be trying to keep cool, either by staying in the shade, taking cold drinks or splashing cool water on their face/head. They must be given access to water throughout the day and night. The use of a fan will help keep them cool in winter as well as in summer. It must be remembered that children affected by Ectodermal Dysplasia can suffer indoors in the winter months due to central heating, as much as from the heat outside in the summer months. Should the child have a fever due to an infection, the use of a paracetamol suspension will reduce the fever, but care should be taken as the internal core temperature may continue to rise after the use of a paracetamol suspension. Plenty of flannelling down or spraying with tepid water and the use of a fan will help. However, a persistent fever must always be referred to your Doctor in case of infection.

The benefits of a damp T-shirt and dampened hat are great even in the winter indoors when the central heating is on. A refillable water spray bottle that produces a fine mist is great for spraying on the child’s head, T-shirt, arms and legs (i.e. artificial sweating). Portable fans are readily available to purchase, and it is now possible to buy fans for the car which run off a 12v supply; a fan by their bed at night will help them settle quicker and frequent cool drinks also help. If the child has overheated, a tepid (not cold!) bath or shower is advisable and possibly paracetamol suspension. As above, a child with a persistent fever must always be referred to your Doctor in case of infection.

Travelling by car or public transport (unless air conditioned) should be avoided in hot weather if possible, but if absolutely necessary the following precautions are essential: ensure you have a large container of water and a flannel/cloth for sponging down, a fan if you have one and plenty of cool drinks (be prepared for lots of toilet stops on longer journeys). It is a good idea to make use of window blinds to shade the passengers in the rear of cars. Always try and park in the shade. Cardboard windscreen covers for when your car is stationary are also extremely helpful.

Severn Trent WaterSure Scheme

Through the Severn Trent WaterSure Scheme, families with children/or adults with additional needs and require access to more water can be awarded help with their water bill.

Severn trent logo

“To get help through WaterSure you must have a water meter and receive certain benefits”

You must also have either:

a)   three or more children under 19 living with you, or
b)   a medical condition requiring the extra use of water

If you are applying on medical grounds and your medical condition is not listed on our website then we would require one of the following:

  • A recent letter from your GP or Consultant, confirming the name of the patient, medical condition and the reason for the increase in water usage
  • An official Hospital/Surgery/Clinic stamp from your Consultant/Doctor/Nurse or Health Visitor and signed and dated by them to confirm the medical condition and the reason for increased water usage

You must also be a Severn Trent customer.

During the warmer months, our ED families rely heavily on extra water for drinking and cooling methods, so this will be hugely beneficial to them…..especially when filling up those paddling pools!

Find out more and how you can apply here


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

Ectodermal Dysplasia and core temperature 

Glastobaking part 1 – Camping at Glastonbury with ED

Glastobaking part 2 – Surviving Glastonbury without the sweat