The agonies of two kids who don’t sweat, have to always pour water on themselves to keep cool

Shawn and Alvin Udoh are not twins, but are more identical in the challenges nature has thrown at them than most Siamese twins, as they both battle with Ectodermal Dysplasia, a rare skin disorder.

At nine and 10, the two children do not have teeth. They do not have hair; completely bald and they have to cope with significant learning disabilities. According to Akinsanmi, the ailment is a genetic disorder that affects the outer layer of the tissue of the developing embryo — Ectoderm — which makes up the skin, sweat gland, hair, teeth and nails.As such, all these structures can be affected. In general, it consists of about 180 disorders depending on the areas affected. It usually does not have a significant effect on life expectancy.

“We sweat to lose heat, but the kids can’t sweat well. So, they have very high temperature. With little fever, they may convulse and have stroke easily. “The country should be able to protect these people but we don’t have such help except a particular group of people decide to take it up and form an awareness association to discuss the problem. But it is very rare,’In this regard, Mrs Udoh, their mother, said of her effort in creating an awareness platform, the African Foundation for Ectodermal Dysplasia .Many people don’t know about the disorder. So, I started an advocacy to create awareness about it across Africa.

“I try to build my children’s self-esteem in every step of the way and try to enlighten people when they stare at them strangely that they just have a rare genetic disorder; they are not different from them.Udoh, a civil servant, however, recalled a day one of the children came home from school crying.

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