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Local man rises above rare genetic disorder

A local man who suffers from a rare condition that prevents him from being outside for long periods of time is sharing his story that affects three in about 10,000 births around the world each year.

Myron Curtis, a local antique dealer, suffers from a genetic disorder called ectodermal dysplasia or “ED.” Specifically, a type called Hypohidrotic Ectodermal Dysplasia.

In Myron’s case, he has no sweat glands which means he can’t cool down properly.

Myron says his mother was a carrier of the genetic defect which also passed down to his grandchildren. “My mom had it and would pass on to her sons except I was the only who ended up with it out of two boys, said Curtis. “My younger brother was normal if you had us side by side we wouldn’t look like brothers at all.”

According to the National Foundation of Ectodermal Dysplasia (NFED), more than 180 different disorders have been identified as part of the condition. Some people may have missing fingernails or fingers, others have a cleft lip or plate. Some have tooth enamel problems, irregular skin pigmentation or problems with vision or hearing.

His wife Janet has to constantly plan for the heat and watch for signs that her husband is getting warm.

“Because of the environment, our house is cool enough, not cooking to keep the house cool in the summer things like that, not leaving doors open during the day, it’s just an adjustment, you have to learn and we’ve become accustomed to that.”

Despite the inability to sweat, Curtis doesn’t let that stop him from living out his best life. He enjoys playing with his dog Jasmine, collecting gold items and other outdoor activities.

“It’s something I have to constantly watch for.”

While Doctors work on therapies and research to develop treatments, Myron and his family are continuing to move forward and live life to the fullest.

“I’ve had to learn how to cope with being handicapped in a society that didn’t know how to deal with people like us back then.”

Myron is on a mission to spread awareness to let people know he’s human just like everyone else and hopes people look at him for who he is and not what he has.

“The message I would probably give to someone that has our condition, or any disability, you have to keep in mind this is a physical disability, not a mental one.”

To learn more about Ectodermal Dysplasia, click here.

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