Winter 2013 Edition

On Being An Athlete With Ectodermal Dysplasia
by Kim Goulding, a CEDSA supporter since 2010

I have a very athletic 12-year-old boy; his name is Kyle. He plays hockey, soccer, baseball and works out at the gym three to four times a week. Oh yeah, and he also has ectodermal dysplasia and he does not sweat. We never stop him from doing his sports, we just find ways to do it safely! We have a cooling vest which makes this so much easier. We just load up the cooler with ice and water and put an activated cooling vest in a bag in the ice. When he starts heating up we just slip his vest on under his uniform and he’s good to go. Sometimes, when it is really hot, we will just slip off the vest and put it back in the water and ice for a few seconds and he is good to go again. I always take water bottles and squirt bottles when we go to the games too; I take a few so the whole team can use them. I wouldn’t go a summer again without a vest. It sure makes it a lot easier on him (and me)! We are lucky to have air conditioning in his school, which used to be just in his classroom but now the whole school is air conditioned.

As part of his ectodermal dysplasia, Kyle only has eight of his own teeth. At first he only had six but two more front teeth came as he aged. He has had his teeth built up and re-shaped to look like “normal” teeth since he was two-years-old and he has had dentures since he was three. Last year he had braces to pull the front four teeth together and had implants put in the bottom and his bridge / dentures snap onto them. When he gets 17 or 18 he will get more implants, if he decides he wants them at that time. Right now he doesn’t really care, he is quite happy with the way they are! Also due to his syndrome, Kyle has had a lot of skin problems, and was often always broken out and itchy. At night I use to tape gloves on his hands so he couldn’t scratch! He has finally started to outgrow this, thank goodness, I guess as he gets older his body is changing. He has never had eyebrows but they are now starting to grow in too. To combat his dry nasal cavity issues, we use a saline mist in his nose every couple days so he doesn’t get nose bleeds.I guess looking in at our family you would think it is a lot of work but it is just routine to us. We just do it, and we wouldn’t have it any other way. Kyle is very outgoing, good natured, and he is one fantastic kid!
CEDSA is proud to have supported Kyle and his love of sports, and have provided him with two cooling vests over the past two years. Way to go Kyle for not letting ectodermal dysplasia slow you down!