They don’t sweat at all: Community with rare genetic condition seeks recognition

Echaor Ilimanyang,14, from the Ilimnyang community cools himself with water in Turkana Central. [Baakari Ang'ela, Standard]

Peter Lomonta was born with a rare disorder. His body has no pores and therefore he does not sweat.

He is a member of the minority Ilimanyang community living at Kapua village on the shores of Lake Turkana.

Nearly two centuries ago, a Turkana man called Ilimanyang married a woman from the minority El Molo in the neighbouring Marsabit County and the result was the Ilimanyang minority group.

The Ilimanyang have rare disorders such as dry skin and lack of hair on their heads. Adult members of the minority group have only two teeth out of the normal 32. They carry water wherever they go to cool their bodies. The rare conditions appear among males.

Eroo Ilimanyang, an Ilimanyang community boy with his mother Asuluu Ilimanyang in Turkana Central on June 19,2021. (Bakarai Ang'ela, Standard)

For the last four years, the group has been calling for special recognition as a community with rare disorder.

Amidst the calls, health experts are warning the group against marrying each other to stop passing on the traits.

Peter Lomonta says the community has a population of 39 members, noting that a majority of them have been dying at a young age due to the rare condition.

“We want to be recognised as a community living with serious disorders so that we are granted close attention by health authorities,” Lomonta says.

Their skin, he says, have no pores, a condition that makes their body temperatures rise to high levels.

“We are forced to move around with jars and jerricans to cool our bodies every hour when the temperatures rise,” he says.

It is a situation that has left school-going children with no option but to carry jerricans of water to class. They have to dash outside from time to time to cool their bodies.

Lomonta further explains: “We have only two teeth (incisors). And unlike other children, Ilimanyang children can’t chew a meal of maize and beans offered at school.”

He says a very small number are born with light-coloured, brittle and slow-growing hair, which disappear at teenage.

Levies Ekai, an Ilimunyang living in Lodwar, says members of the community that moved away from the lake and intermarried with other communities have no history of the disorders.

Abel Kerio, 9, in Turkana Central. He comes from the Ilimanyang community. Since birth, Abel has grown only one tooth. (Bakari Ang'ela, Standard)

“As a community, we believe that this disorder is a curse. Our great-grandparents told us that a long time ago, our ancestors raided a community within Turkana, killed and stole livestock. The rival community cast a spell and that is why we are living with disorders,” Ekai says.

Turkana County’s Director of Medical Service Gilchrist Lokoel says the disorders are genetic and prevalent among male members of the community.

According to Dr Lokoel, the disorders are passed from fathers to their male children.

He asked members of the community to stop intermarrying to stem passage of the disorders to the next generation.

According to MedlinePlus, a United States public health information online site, hypohidrotic ectodermal dysplasia is one of more than 100 types of inherited disorders.

The public health website indicates that the genetic disorder results in abnormal development of ectodermal tissues, particularly the skin, hair, nails, teeth and sweat glands.

“Most people with hypohidrotic ectodermal dysplasia have a reduced ability to sweat (hypohidrosis) because they have fewer sweat glands than normal or their sweat glands do not function properly,” a Mediplus report says.

“Sweating is a major way that the body controls its temperature. As sweat evaporates from the skin, it cools the body. Reduced sweating can lead to dangerously high body temperature (hyperthermia), particularly in hot weather.”