Nod Off

An article about the Saudis seemed ideal for this week’s chronicle, particularly after reading Applebaum’s excellent analysis.

There’s an old story about a Saudi college student in Germany who writes home saying he feels bad going to classes in his Porsche—all his German friends go in by train. In short order he gets a reply from his father with a check for one million dollars. “Don’t embarrass the family—buy your own train.”

How appropriate then that the outcome of a Saudi palace coup results in imprisonment chez the Ritz-Carton.

But my appetite for this topic waned as I read with horror about the tragedy of nodding disease. To find such stories, you’re either in the mini-columns of the Sunday magazine of a Western paper, hidden behind the fashion, sport, digital media, cookery, travel, and collectible antiques, or leafing through a Sub-Saharan newspaper.

Sunday Layet, an eighteen year old Ugandan girl with nodding disease.

The journalist says the girl looks no more than ten—it’s a challenge for any man to guess a woman’s age, and the picture doesn’t give me much perspective on height, but she does seem considerably older, perhaps in her early teens.

However, the arresting part is the description of a young lady who stares vacantly for minutes at a time, her head then falling, saliva drooling out of her mouth.

For six years, Layet has spent every second of her life like this: gazing, nodding, wandering or tied to a tree. She cannot play, go to school, date… she just cannot do anything

This is the story of nodding disease, which affects parts of Africa, destroying children and families.

Sunday Layet is one of thirty-two children, borne to her father from five different wives. In a logic that reverses Western thinking, Mr. Ocitti had more children because of the prevalence of the disease, not less. Seven of Sunday’s siblings also have the disease.

And Sunday’s mother is blind.

Since these kids don’t go to school, or work in the fields, the parents leave them locked up all day, or perhaps tied to a tree. In a very African twist to this tale, the girls are preyed upon due to their disability and raped.

In one hideous case, a father remained at home when the mother left for work, and raped his own diseased daughter, giving her AIDS.

But why does this strange disease occur? The cause of such an illness might be one of four: (i) a pathogen, which is the most likely; (ii) a genetic defect; (iii) chemical contamination, like the mercury spills which killed forty-six people in Minamata, Japan, between 1948 and 1960; (iv) a nutritional deficiency.

In Uganda, Kitgum district has the highest incidence of the disease. Kitgum is at the very north of Uganda, and borders the much-troubled South Sudan. Nodding disease is by no means new, with the first descriptions appearing in South Sudan and Tanzania in the early 1960s.

The formal symptoms are fearsome, and some of the population interpret the disease as witchcraft rather than a medical condition.

  • Nodding syndrome typically affects children between five and fifteen years old
  • It is characterized by fits of nodding, often when kids are offered food or are cold
  • The seizures are brief and often lead to collapse and injury
  • It stunts the growth of body and brain, and impairs learning
  • It is poorly understood and incurable

It’s remarkable that a disease which is about sixty years old should be a source of such hardship, and yet be so badly understood—if this were a malady of the developed world, I’m certain medical progress would have been vastly different.

So what do we know?

Doctors have classified the disease as a form of epilepsy, and recent work has found that affected children have a high incidence of the parasite Onchocerca volvulus—the worm that causes river blindness.

If you think spooky soaps like Stranger Things are frightening, the life cycle of this baby is way more scary. Incidentally, if you google nodding disease, you get 465,000 hits, but if you google stranger things, you get sixty-five million—to me, that’s real scary.

The black fly, which thrives in fast moving rivers, gorges itself on human blood. During its blood meal, the female fly injects microfilariae of the worm into its victim. These develop into larvae under the skin.

Soon, the worms grow inside your skin, forming nodules or lumps. Then they mate, and after that the female worms release one thousand microfilariae into your tissue every day.

The worms live in your body up to fifteen years. The microfilariae live inside you for one to two years, and when they migrate to the eye, you go blind.

The current wisdom is that the nodding syndrome may be triggered by the human body itself, in something called an autoimmune response, where the antibodies produced to fight river blindness end up causing the syndrome.

To test whether river blindness is involved, families can be isolated or relocated to ensure kids are not bitten by the fly—what are we waiting for?

What also remains unclear is why nodding disease does not occur in many areas where river blindness exists. The mystery continues.

But above all, the greatest mystery is why we spend so much time discussing Trump’s inanities and five (hundred?) other pointless topics instead of making a child well again.

The India Road, Atmos Fear, Clear Eyes, and Folk Tales For Future Dreamers. QR links for smartphones and tablets.

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