“Nodding Disease” Steals the Lives of Children

Though cases of “nodding disease” were reported in the 1960s in Southern Sudan, outbreaks emerged in Uganda in 2003 and have recently drawn a lot of attention.  In 2009, the Ugandan government requested the help of Western organizations.

This mysterious disease is without a known cure or cause.  The children affected are between the ages of one and nineteen, but the worst affected are three to eleven.  The first symptoms are much like the beginning of epilepsy.  When the children are encountered with food or a change in temperature, seizures begin.  They start convulsively nodding and losing focus.  This is where the name derives.  Eventually, it leads to debilitation, causing brain atrophy, mental retardation, and stunted growth.  The children are left as empty shells in their bodies until they die, usually from secondary causes.

Overwhelmed parents do not know what to do.  Out of desperation, they tie their children to posts.  If they don’t, when they leave to go to the market or simply work in the field, the children wander off and get lost for days or sometimes never return.  The infected often break out in violent tantrums, act paranoid and hide from nonexistent pursuers, or lose focus and, while seizing, fall into cooking fires or drown.  Some victims have reported feeling suffocated or weighed down by an unseen, heavy object.  With each seizure, parents report that they lose a part of their child.  They recover but are never quite the same, until one day they lose the ability to function completely.

Without a known cause for this horrifying disease, there is also no cure.  93% of cases are found in children also affected by the parasitic worm, Onchocerca Volvulus, which causes river blindness.  However, experts cannot find a direct relationship.  Many children with this parasite are not affected by nodding disease.  Studies also show a deficiency of vitamin B6 in the victims.

Since 2009, nodding disease has killed at least 200 children.  More than 3,500 others are currently affected, and the numbers grow daily.  Some villages are completely without medical attention.  Where there are medical outposts, limited patients are treated with drugs that control epileptic seizures.  These drugs have produced only a retardation of the symptoms, and there is a very limited supply.  Ugandans feel that the government is neglecting them and have lost all faith in the government.  Hon Beatrice Anywar, a Ugandan politician, became so distraught over the lack of aid, that he took 25 children to a hospital in the capital, Kampala, forcing people to pay attention.  More clinics were opened and people were trained, but not nearly enough supplies, food, and funds to expand the clinics’ capacity were given.  Recently, two lawsuits were filed against the Ugandan government for negligence.  The government says they will fight the lawsuits “filed out of ignorance,” because they claim they have been working hard to help their people.  In 2009, they asked for the help of the World Health Organization, Center for Disease Control and Prevention, and UNICEF, who all paired up with local health teams.

Though the outbreak is most prominent in Uganda, Liberia, Sudan, and Tanzania also suffer from the mysterious disease.

 For more information:

The Real Battle in Uganda (Foreign Policy)

Are We Not Ugandans? (Foreign Policy)

Global Health Frontline News

Mysterious Nodding Disease Debilitates Children (CNN)

Uganda: Government Accused of Negligence Over Nodding Disease (IRIN)

The Syndrome Stealing Uganda and South Sudan’s Children (BBC)

Uganda’s Nodding Disease: ‘I’ve Lost Hope’ (BBC)

Uganda: Nodding Disease or “River Epilepsy?” (IRIN)


 By Caitlen Sellers, 2012 GTS Fellow

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One Comment on ““Nodding Disease” Steals the Lives of Children”

  1. Jen Saffron says:

    Thanks for bringing this to our attention – this is the first I have heard of this, and awareness is the first step. Thank you, Caitlen.


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