TUCSON, Ariz. (KGUN) — The sun shines over Arizona about 300 days a year, so imagine not being able to sweat or cool down. With temperatures well over 100 degrees in Tucson it leaves most people sweating and finding ways to escape the sun. That’s what Tamela Tibbitts and her family are dealing with every day. Her 8-year-old son Nekoda has ectodermal dysplasia.
“We can go outside to the car, and it really wouldn’t affect us. He would be red within 2 minutes and then the skin around his mouth would turn yellow. Then he would get sleepy and tired,” Tibbitts said.
Tibbitts says if they’re not careful Nekoda can overheat and fast.
"Ectodermal dysplasia for Nekoda is, he has a reduced ability to sweat, he’s missing teeth and he has eczema all over his body, just to name a few things,” Tibbitts said.
Nekoda goes through an entire process before he leaves the house for school or his latest competition. Tamela discovered the National Foundation for Ectodermal Dysplasia when her son was 3 and found out she carries the gene. Other family members are also dealing with the same issue.
"What we do to keep him safe is a lot of water breaks - we have extra cooling equipment. We have large ice packs that we put in his car seat. He has cooling hats. This is his wet vest, which is his favorite, it keeps him cool the longest. The ice vest , we just put the ice packs in, he uses it when it's not too hot and he takes it to school,” Tibbitts said.
NFED Executive Director Mary Fete says the condition is rare, and over 180 types of Ectodermal Dysplasias have been discovered so far. The goal of the organization is to educate families and give them the resources they need to stay safe. The disorder affects one in every 10,000 babies.
“Our whole mission is to empower individuals. We have cooling product information and we talk to families about how to maintain body temperature. You know it can be life threatening if you overheat and you don’t have the ability to cool your body,” Fete said.
Symptoms include missing hair, overly thick or thin nails, sweat glands not working properly and missing teeth.
“When he was a year old, he didn’t have any teeth. By the time he was two no teeth had come in,” Tibbitts said. Nekoda wears childhood dentures now.
Fete also says there's a new life-changing clinical trial set for expecting mothers later this year.
“This is for moms who are carriers, this is families who know that they are affected. The treatment that will be given before birth into the mom's womb prenatally, and this synthetic protein that they developed, will trigger the signal for the development of normal sweat glands,” Fete said.
“No matter what you’re going through, there’s always hope and you can live a full life,” Tibbitts said.
For more information on ectodermal dysplasias, visit nfed.org.
