No hair, teeth or sweat: The Ilimanyang suffer from a rare disorder
John Ekuom, 18, sits pensively with his clenched hands supporting his head as he leans backward, hiding from the scorching sun behind the family’s manyatta in Kalokol on the shores of Lake Turkana.
He looks exhausted, perhaps even dizzy, but despite the horrendous heat sweeping across the drought-stricken county, he does not drop a single bead of sweat, unlike members of our team.
A member of the Ilimanyang community, a minority group in the Turkana community said to be just about 40 people, he has a peculiar skin that prevents hidrosis (the action of sweating).
His skin texture establishes that he does not have the pores through which humans perspire.
Mr Ekuom inherited the skin disorder from his mother Athuulu Erupe.
He is not alone. His other six siblings have the same condition, as well as other members of this small community.
Since 2003, when he was born, he has solely relied on water, which he uses several times a day to cool his body temperature.
“My condition requires a lot of water because when it is hot like now, my body temperature skyrockets and I feel bad because I cannot sweat. My skin is enclosed, no spaces for sweat to pass through,” he said.
“Getting water is a nightmare here and so whenever you go to fetch water, you must have another container of the liquid to pour on yourself or you will die,” Mr Ekuom told the Nation.
He dropped out of school at Standard Six because other pupils laughed at him whenever they saw him pouring water on his body.
“Here at home, we all need water to cool ourselves so that we can continue living but when we do that at school, people laugh at us. Some even run away from us, stigmatising us and that is why I left school last year,” he explained.
Peculiar characteristics
The Ilimanyang have two other peculiar characteristics. They have barely a strand of hair on their heads, and when they do, it is scattered, loose brown hair. They also have just a handful of teeth, four at most.
Mr Ekuom and his siblings have two central incisors each but they have not grown any molars and premolars.
The incisors appear at age 10 and above while others like Ekuom do not undergo odontogenesis (tooth development).
“The common meal in Turkana schools is githeri and because we do not have teeth, we cannot eat it and we go hungry. Since I dropped out of school, I have been fishing on Lake Turkana to help my family with food,” said Mr Ekuom.
The Ilimanyang faint if they don’t eat every hour or don’t get water to sprinkle on their bodies every half hour, members of the community told us on our visit this week.
Their hairless skin resembles that of a mudfish and tightens up when exposed to the sun, causing pain if no water is quickly sprinkled on their bodies.
This condition is called anhidrosis or hypohidrosis, a dysfunction in which a person is unable to sweat when they are hot.
If it occurs in the entire body, it can result in overheating and eventually heatstroke, a potentially life-threatening condition.
Research shows that people with the condition should avoid activities and environments that raise their core body temperature, and exercise should be done in a cool place, and preferably under supervision.
The International Hyperhidrosis Society says the condition facing the Ilimanyang is potentially life-threatening.
“Sweat is essential to human survival because it serves as the body's coolant, getting rid of excess body heat (produced by your metabolism and working muscles) and protecting you from overheating,” the society says in a medical opinion on sweathelp.org.
Heat-related illnesses
“Without being able to sweat, they are at high risk for heat-related illnesses such as heat exhaustion and heat stroke. In extreme cases, or if these heat-related illnesses are not treated appropriately, coma or death can result.”
A few metres from Mr Ekoum’s home, we find Selina Apetet, a mother of six, pouring water on her four children to cool them down.
Her husband Mathew Logiron is a Turkana. Of Ms Apetet’s six children, two are normal while the other four display this hereditary disorder that is only seen among the Ilimanyang.
“Our firstborn died but the two that followed, a boy and a girl, are just like him and are in good health.
The other four have the disorder. They use water because their skin doesn't have sweating glands,” said Mr Logiron, who married his partner in 2014.
He regretted that not much help has been offered to them, save for a special lotion he said the community uses to help avoid skin cracks.
“There is no treatment. If they feel heat, they want water. The small one cries and that is when we know we need water,” he said.
As the children grow up, they learn to wet their bodies by themselves without their parents’ help, a necessary survival trick.
“Just like they can eat something or quench their thirst on their own, they have to adapt to wetting their body, especially their head, hands and legs that are the most exposed to the scorching sun,” Mr Logiron said.
For the past eight years, he said, he has never needed to shave his children’s hair, because there just isn’t any to shave.
Nancy Ebulon who belongs to the Ilimanyang community during an interview at Ekuwom’s home in Kalokol on December 13, 2021.
Nancy Ebulon, one of the few members of the community with some education, said that the genetic condition developed when their Turkana grandfather married an Elmolo woman from Marsabit County.
Ms Ebulon said that as the sixth generation of the Ilimanyang, they are just about 40 of them.
“Most children die before developing teeth as they are not easy to manage, especially with most of us poor and living in a town where even water is bought,” she said.
In schools, she said, feeding programmes include mostly maize and beans, which their children cannot eat because they lack enough teeth.
“We require soft food such as rice, ugali and pasta. We don't get such special treatment,” she said.
Medical experts, she said, need to intervene urgently.
“If doctors don't study our condition and tell us the best way to survive, we will all die,” Ms Ebulon said.
Most children with the disorder, she said, are stigmatised at school, and Ilimanyang women are abandoned by their husbands after give birth to children with the “unwanted genes”.
Though all the Ilimanyang have this condition, it is mostly boys who suffer most, with girls only using water up to the age of two.
This means that girls can be carriers of the gene without suffering the condition.
“Only boys and men feel the pinch of this condition. They will need to water their bodies throughout their lives and that is why it is very rare to find an Ilimanyang man reaching age 30,” Ms Ebulon.
“Yes, women do not have teeth but their need for water ends when they reach two or three years old.” BY DAILY NATION
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