The lack of temperature control shouldn’t prevent a child from trying any type of exercise or sports activity. Although overheating can be difficult, or even dangerous, it is important to have a balanced approach. It is important for a child to find out what they can do and how to extend this safely.
Allowing a child to try various activities enables them to learn (i) whether or not they like the sport; (ii) how to accommodate their inability to sweat (if, indeed, they can’t sweat: many people affected by the various types of Ectodermal Dysplasia can produce sweat); and (iii) when to acknowledge that some activities may require more than their bodies can comfortably deliver.
Exercise is good for the body and mind in many ways, it:
- allows the individual to succeed and even excel in competitive sport and other physically demanding activities,
- helps individuals become physically confident in a way which supports their health and fitness,
- helps individuals to learn fairness and respect, teaches team work, and builds belief in their abilities, resilience and mental strength,
- teaches that perseverance to stick at a task and the ability to bounce back from life’s set-backs are qualities that have a major impact on life chances.
For individuals affected by Ectodermal Dysplasia and who cannot regulate their temperature, even a small amount of exercise/sport will be beneficial.
If you don’t see your child sweating that doesn’t mean they don’t sweat. Children sweat less than adults, but because they are small they can remove relatively more heat via non-sweating means and so may not need to sweat as much. It may only be as your child grows taller and heavier and as they start puberty that sweating becomes more obvious.
So, the principle to adopt is (within reason) the more exercise the better, but even a little bit is good!
We have ample evidence of individuals affected by Ectodermal Dysplasia who have successfully participated in sports, including athletics, football, basketball, rugby, track, tennis, gymnastics, swimming, martial arts, bowling, etc. Included in that number are some individuals who were extraordinarily successful and deemed champions.
In 2020, we were very fortunate to have made contact with up-and-coming 20-year-old tennis player Francesca Jones.
Jones has competed at Wimbledon and the Australian Open playing tennis. She was born with Ectrodactyly Ectodermal Dysplasia (EEC), which affects the fingers and toes. Fran has three fingers and a thumb on each hand, three toes on her right foot and four toes on her left. She also started life with webbed fingers. The 20 year-old from Bradford has to use an extra lightweight racket with an especially thin handle to accommodate her grip.
She wants to inspire others to overcome adversity, not claim revenge on the doctors who told her to FORGET a tennis career. Her motto……. “the greatest thing in life is to do what people say you can’t do”.
For people affected by Ectodermal Dysplasia and who have little or no ability to sweat, provision must be put in place to help participation, such as:
- Only wear cotton sports clothes.
- Wear a wet T-shirt.
- Have a bucket of water or spray bottle on the side line (to pre-wet your clothes and keep them wet).
- Sit with hands (and/or feet) in a bucket of cold water – hands best.
- Wet the head.
- Have a hand held electric fan for face fanning*.
- Have a bottle of drinking water on the side line.
- Wear wet cotton wrist and head bands*.
- Wear a cooling jacket.
- Have a slushy icy drink before starting.
- Wear a helmet cooling liner (take the helmet off when sitting on the side line).
- Have bare feet or use very thin cotton socks.
- Play for half a game.
- Find shade whenever possible.
- Exercise/train at coolest times of day.
- Start your exercise cool.
- Set up a “cooling station”: large fan (whole body fanning), spraying bottle, shade (gazebo), buckets of cold water (for hand immersion or to wet T-shirts), ice/slush drinks
Some of the above (*) make you feel cooler; the others are good ways of actually cooling.
Water is good on the outside of the body as well as the inside! Keep wet, inside and out! Keep hydrated and use it on the surface of the body as artificial sweat.
Talk to the referee/coaches, school, etc., so they understand the issues and ensure that appropriate provision is put in place.
Winter can be a good time to play sport.
Swimming can be an excellent choice too: the pool would have to be really hot for you to have any chance of over-heating!