Invisible Children. Response to Nodding Disease echoes the Northern Uganda war and more

One of the theories now “dismissed” in explaining the relationship between the neurological disorder known as “nodding disease” and its prevalence in the northern part of the country- is that it had anything to do with the war. One expert said it had nothing to do with war era ordinances. No bombs or other weapons of destruction could have caused these side-effects of seizures and involuntary spasms- a constant “epilepsy” that leaves children in a vegetative state- their parents bewildered. It is hard to ignore the bitter irony.

If the “ Northern Uganda” war had nothing to do with “nodding disease” perhaps we can discuss the geography of this disease more intelligently than has transpired so far? It would be fair since the geography of this place has been essential to the response by Ugandan institutions and development partners as well as the public to its well publicised horrors.

Why has nodding disease emerged in the war’s most affected districts of Pader, Kitgum and Gulu? What is it about 5-15 year olds, just out of the camps that makes them susceptible to the disease?

There is a term for this conversation.Correlation is not causation.Geography however is also essential to the science of diseases.

One of the undesirable facts about the Northern Uganda beyond the conflict itself were the attractiveness of its conditions for disease research. More people died from diseases than from injuries sustained in the war as a result of being crammed, like poorly tended cattle, into the so-called “displaced” people’s camps. In the intervening years outbreaks such as ebola were reported in these parts. Experts can confirm today  that the corridor where nodding disease is raging is a well-researched one with regular surveillance for outbreaks including Hepatitis E and others. Many respectable institutions including the Centers for Disease Control and its Ugandan partners, given the human conditions here, have sentinel sites to monitor the population. Studies continue in surrounding communities as the end of the war has bred new conditions.

A simple check with Makerere University's Institutional Review Board that tracks, approves and theoretically monitors disease research should reveal the extant of scientific interest suggested above.

It is rather baffling therefore that so little is known about nodding disease itself. The closest symptoms to the condition that I have encountered is  narcoplexy which is some sort of rare sleeping disorder. Nothing really connects this condition to Northern Uganda save for two potential theories. One is that nodding disease is a consequence of vaccine trials against swine flu or that it is caused directly by swine flu infecting humans.

Recently during the mad dash for a vaccine to deal with H1N1 there was an uproar in Europe when respected pharmaceutical companies were accused of inducing a severe and debilitating form of narcoplexy in children following the administering of a flu vaccine.

A lot of this information is public and anyone can construct their own opinion on the matter. Last year the BBC reported that Pandermix, one of the vaccines was being investigated by several countries including Finland for the link to “nodding disease” like conditions. They include cataplexy, or loss of muscle tone during severe attacks. The use of the vaccine was discontinued and the World Health Organisation launched its own inquiry. The issue whether the vaccine caused "nodding disease" or not  has not yet been resolved as a paper here at Stanford University's center for the study of narcoplexy suggested it may be caused by other factors.

Read the  Finland Report on Narcoplexy ( Its interesting that the symptoms are clustered within the ages of 5-19 years)

If a flu vaccine administered in trials or research is the cause of nodding disease- it has not come out yet. It certainly warrants a look since there are so few answers as to what is causing nodding disease itself. Running with the theory that it is swine flu virus of one sort or another linked  is not a stretch. It is fairly common knowledge that scientists in this field are pre-occupied with the dangers of direct transmission of swine flu to humans.

Indeed Gulu and surrounding districts are victims of outbreaks of the African swine flu that often affects pig rearing. There are many articles to this effect. Just googling now revealed several studies discussing the worries about swine flu transmissions from animals to humans and humans to humans by amongst others the CDC. The agency, which is also involved in investigating the Uganda nodding disease issue, is however yet to publicly link swine flu or its research to nodding disease. Whether or how this link has been eliminated as also not been explored judging from the coverage on the issue.

Aside from vaccine trials gone bad- there may be no link between the European cases of flu vaccines causing “nodding disease” symptoms and Ugandan versions of this condition. But given the common link that a flu virus is involved there aught to be more answers than questions especially from the affected public ( without of course instinct to point to a conspiracy which can distract and be used to distract in equal measure).

But there is national paralysis when it comes to Northern Uganda.

In Gulu, one of the fastest growing towns in Uganda, teenage prostitutes, perch at street corners where not long ago some may have been spending the night as “commuters”. At the height of the war these children walked tens of kilometers to sleep on the pavements of the town for safety. They were made “famous” by the US charity “Invisible Children” as the horror of their plight captured the imagination and hearts of students in college campuses across the United States. However the latter day tragedy of these victims is a story told less through the lenses of the war that expired in 2006.

Gulu, whose slums are hardly an improvement of camp conditions, is just another Ugandan town now. And as fate would have it, the fact that the 4000 children affected by nodding disease, like some sort of PTSD, hail from the districts most affected by the war has not registered with the reporting of the disease.

There is no campaign by Invisible Children or statements about the horror of the children maimed for life by this disease their hapless parents forced to endure another lifetime of incaceration.  Nodding disease is a very northern Uganda condition complete with its capacity to be ignored and mis-diagonised if diagonised at all.