Living without the ability to sweat in Arizona – KGUN

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. Thats 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 wouldnt 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 theyre not careful Nekoda can overheat and fast.

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.

Tibbitts Family

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.

Symptoms include missing hair, overly thick or thin nails, sweat glands not working properly and missing teeth.

When he was a year old, he didnt 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.

Tibbitts Family

No matter what youre going through, theres always hope and you can live a full life, Tibbitts said.

For more information on ectodermal dysplasias, visit nfed.org.

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Living without the ability to sweat in Arizona - KGUN