My Story: Rare Condition Makes it Hard for me to Sweat, Smile, Grow Eyebrows…

May 13, 2019
Muturi and her mother Anastasia.

Duncan Muturi suffers from ectodermal dysplasia, a rare inherited multisystem disorder that typically affects the hair, teeth, nails, sweat glands, and/or skin.

He shared his story with Sunday Magazine:


I was born completely bald and seemingly healthy at 3.8kg. My mother tells me that I would experience high fevers often and soon we were fixtures at the local clinic. I also wasn’t adding any weight. She was advised to take me to Kenyatta National Hospital where I was diagnosed with acute calcium deficiency.

They said my situation was so bad that I had rickets which had affected my digestive system and that my body was unable to absorb calcium from the breast milk. All the nutrients, they explained, were discharged in the stool. That explained the oily substance that my mother saw in my bath water every time she bathed me.

At six-months-old, I was so wasted that bones protruded beneath my wrinkled skin. My mother was admonished for not feeding me well. A number of medics hinted at my having one deadly disease or the other. After I was diagnosed with acute calcium deficiency at KNH, doctors prescribed medication to help my body absorb calcium. My mother also started feeding me with supplements until I started gaining weight.

I started walking after age two. When my sister was born, the last born in our family, she teethed before I did. A dentist told my mother that I didn’t have any teeth in my gums. And it was difficult for the doctor to construct dentures since my gums weren’t growing. All the while my mother thought that my poor milestones were linked to calcium deficiency as the doctors had said. But despite all this, I went to school at age 5 where I proved to be very smart.

At Standard Six, it was evident to me that I was different from other children. They also noticed this and started calling me ‘little old man’ because I didn’t have teeth. I was different. I also had a problem regulating my body temperature and later learnt I didn’t have sweat glands for this.

When it got really hot, I would run to the tap to pour water on my whole body because I would feel like I was burning up. I experienced a lot of pain when swallowing solid foods. I learnt this was because I didn’t have salivary glands to lubricate my food. Neither did I have mucus glands along my digestive tract to further lubricate solid food for ease of swallowing.

While visiting someone in Botswana, I met a relative who had been diagnosed with ectodermal dysplasia. I was able to relate to most of his features including lack of teeth and very scanty hair on the scalp. Just like me, his eyebrows and eyelashes were also missing. We also had extremely dry skin. My skin sometimes cracks and I have to use special cream to keep it lubricated.

I researched and found out that ectodermal dysplasia sometimes runs in the family. My relative in Botswana confirmed this. My mother also has the condition though hers isn’t as severe. She has very few teeth and has had to insert a bridge. My youngest sister also has distorted teeth. I secured a denture shortly before I joined high school which was placed in my upper gum. The lower gum couldn’t hold it. Doctors say I need four teeth implanted in my lower gum to hold a bridge.

My biggest struggle at the moment is adjusting my lifestyle to regulate my body temperature mechanically. I can’t stay in a congested room and my mother has had to rent for me a spacious apartment near the school so that I don’t stay in the hostels. I choose to travel in evenings when it is cooler. I thrive in cold weather. I also eat early in the mornings, usually liquids and fruits and at night to avoid generating a lot of heat. In school, I can also play indoor games to avoid heat from the sun.

I wish there was enough information about this condition out there. It isn’t just the medics who fumble with misdiagnosis but also the caregivers. Few doctors have told me I have ectodermal dysplasia without proper tests. They admitted to their lack of knowledge about the condition. Unfortunately, doctors claim Kenya is still grappling with non-communicable diseases and has no thought for such rare conditions as ectodermal dysplasia.

It doesn’t help that people with the condition aren’t recognised as people living with disability. Once, my mother needed a new set of teeth and was turned away by a medical insurance fund on claims that the organisation didn’t fund people for beauty. Elsewhere, people with the condition are given special vests to help regulate their body temperatures.

Not being able to smile because one doesn’t have teeth is difficult to handle. I know a young man who quit school because his classmates couldn’t understand why he didn’t have teeth. I am also fortunate to belong to a support group of people living with ectodermal dysplasia where we encourage each other to face life positively.

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