Living the Nightmare

In the shade of a kubwa tree, clouds start to roll in over the great African plain while a woman watches from afar as her child nods off to sleep. But her face is pained, for she knows that pleasant dreams won’t soon come for him. Like many of his friends, he is suffering from the strange and unexplained symptoms of Nodding Disease. She has been neglecting her duties for days now and food and water supplies are running dangerously low. Leaving him unattended isn’t a risk that she takes lightly; the burns on his body still bear mute witness to the seizure that had left him helpless in the flames of their cooking fire. She would have to tie him up inside the hut before leaving for the fields so that he doesn’t wander off.

The disease, mainly affecting children between the ages of 5 and 15, is named after its most noticeable symptom. Children appear to be nodding off, their eyes closing and their heads getting heavy despite them being wide awake. This behaviour has been linked to seizure activity that usually begins when the affected eats food or, in some cases, when they are cold. Other symptoms include, but are not limited to:

• seemingly permanent stunted growth
• brain atrophy
• difficulty focusing and concentrating in class
• body stiffness
• running nose and saliva
• occasional defecation and urination during an attack

Many of the affected children are malnourished, a direct consequence of their parents being afraid to feed them lest it induces a seizure. Nutrition isn't the only aspect of their lives taking a turn for the worst; some 1500 children in the Acholi sub-region have dropped out of their schools as a result of the disease.

Chronologically, the reported occurrences of the disease are:

1960’s:	Several children with attacks of “Nodding Head” were observed in Mahenge Village in southern Tanzania by L. Jilek-Aall.
2003:	Approximately 300 cases were reported in South Sudan’s Mundri District alone.
2009:	The disease spreads to Uganda’s Kitgum District and the Ugandan Ministry of Health declared more than 2000 children affected.
2012:	Outbreaks have been reported in the Kitgum, Pader, Gulu and Lamwo districts with roughly 4000 affected and 200 children dead.

Health experts and local leaders have been unable to pinpoint the cause or mode of transmission of the disease and very few children are said to have recovered from it. Some say the disease may be caused by the effects of the biological and chemical weapons used during the two-decade insurgency in the area. Another possible cause is said to be consumption of tainted food such as spoiled plants or meat, especially monkey meat.

Other investigations have shown that there might be a connection between Nodding Disease and infestations of the parasitic worm Onchocerca volvulus, which is prevalent in all outbreak areas and is known for causing Onchocerciasis (also known as River Blindness). The WHO’s Dr. Emmanuel Tenywa has noted that almost all of the affected children have Onchocerciasis. In a 2008 study researchers published that something they called “Head Nodding Syndrome”, might possibly be a new form of epilepsy disorder in sub-Saharan Africa.

“MRI lesions and their association with positive skin PCR for O. volvulus despite negative PCR of the CSF is intriguing and deserves attention. “

Relatively little is still known about the disease and authorities have only recently started taking notice of it. Health Ministry officials have finally agreed to visit affected areas and assess the situation a week after the Acholi Parliamentary Group warned that they would camp at the Ministry’s headquarters to mourn the children. The governmental team is expected to deliver medicine to health centres, carry out epilepsy check-ups, intensify training of health workers and sensitise more people on how to handle the sufferers.

Nodding Disease may not been seen as one of the notorious diseases of our time but it has a disastrous impact on the lives of thousands of families every day. I sincerely hope that this article will help spread awareness about this mysterious disease and the horrible effects that it has on the people in its path.

SOURCES:
Global Health Frontline News
Wiley Online Library
World Health Organization
The Saturday Monitor - Nodding Disease: MPs threaten to ferry ill children to Kampala
The Saturday Monitor - Officials to visit Nodding hit areas
H5N1 Blog
allAfrica.com
Wikipedia - Nodding Disease
Wikipedia - Onchocera Volvus