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Ugandian Kids affected by the Disease.

What is the Nodding disease. – This syndrome is a recent and shamefully little-known disease that first really emerged in Sudan in the 1960s. It only affects children younger than 15 years old. It is a fatal, mentally and physically disabling illness  currently restricted to small regions in South Sudan, Tanzania, and specially the northern Uganda. Prior to the South Sudan outbreaks and subsequent limited spread, the disease was first described in 1962 existing in secluded mountainous regions of Tanzania, although the connection between that disease and nodding syndrome was only made recently. Its symptoms are very peculiar and when children are affected by it, their growth is stunted completely and permanently. The growth of their brain is also stunted, leading to mental retardation of the affected individual. The name ‘nodding syndrome’ is due to the characteristic, pathological nodding seizure. These seizures are brief and can manifest themselves with a wide degree of severity.

A tied-up Kid affected by the Nodding Syndrome.

Severe seizures can cause the child to collapse, leading to further injury, that’s why very often, young kids affetced by the disease are crudely tied up with a rope to a pole. Sub-clinical seizures have been identified in electroencephalograms, and MRI scans have shown brain atrophy and damage to the Hippocampus and glia cells.

What Science says – Nodding disease is still simmering away in Uganda, it really is striking how little the experts seem to know about it. 

Peter Spencer

Neurotoxicologist Peter Spencer, who has investigated the disease, has stated that “upon presentation with food, one or two children will start nodding very rapidly in a continuous, pendulous nod. The child next door will suddenly go into a tonic-clonic seizure, others will freeze.” – “It is, by all reports, a progressive disorder and a fatal disorder, perhaps with a duration of about three years or more. “While a few children are said to have recovered from it, many have died from the illness. Seizures can also cause children to collapse, potentially causing injury or death”. In the future, neurological scans may also be used in diagnosis. As there is no known cure for the disease, treatment has been directed at symptoms, and has included the use of anticonvulsants such as sodium valproate and phenobarbitol. Anti-malaria drugs have also been administered, to unknown effect. Even if the causes of the disease are currently not known, it is believed to be connected to infestations prevalent in all outbreak areas of the parasitic worm Onchocerca volvulus carried by the black fly and causes river blindness. In 2004, researcher showed how most of the children suffering from nodding disease lived close to the Yei River, a hotbed for river blindness. Also, 93.7% of nodding disease sufferers were found to harbour the parasite — a far higher percentage than in children without the disease.

US Centers for Disease Control and Prevention (CDC)

Doctor Scott Dowell (CDC)

Doctor Scott Dowell, the lead investigator into the syndrome for the CDC, regarding the connection between the worm and the syndrome, stated: “We know that Onchocerca volvulus is involved in some way, but it is a little puzzling because the worm is fairly common in areas that do not have nodding disease”.  While Andrea Winkler, the first author of a 2008 Tanzanian study, has said of the connection: “We could not establish any hint that Onchocerca volvulus is actually going into the brain, but what we cannot exclude is that there is an autoimmune mechanism going on.” The CDC is also investigating at present on a possible connection with wartime chemical exposure. The team is also investigating whether a deficiency in Vitamin B6 could be a cause, noting the seizures of pyridoxine-dependant epilepsy and this common deficiency in disease sufferers. Older, and almost abandoned, theories included a 2002 toxicology report that postulated a connection with tainted monkey meat, as well as the eating of agricultural seeds provided by relief agencies that were covered in toxic chemicals.

Current Disease Situation in Uganda – By 2009, it had spread across the border to Uganda’s Kitgum district, and the Ugandian ministry of health declared that more than 2000 children had the disease. As of the end of 2011, outbreaks were concentrated in Kitgum, Pader and Gulu. More than 1000 cases were diagnosed in the last half of that year. There were further many outbreaks in early 2012, in Uganda, the spread and manifestation may further be exacerbated due to the poor health care of the region. This brought to a wide discussion wether demand a declaration of the northern Ugandian region as a disaster area. Recentely members of Parliament from Acholi have disagreed on this demand. When Alice Alaso, the Serere woman MP, asked during a meeting on nodding disease in Parliament, in fact, only three MPs agreed with the idea of declaring the sub-region a disaster area. 

Ugandian MP  Beatrice Anywar

These are, Beatrice Anywar, Gilbert Olanya and Amos Okot. Anywar says that: “many MPs are undecided because they supposedly have personal interests at stake”, she added that: “the lack of unity among Acholi MPs is preventing vital help from reaching the victims.” She also declared: “I talked to representatives of the European Union, the French ambassador to Uganda and officials of the German embassy to give aid and relief to the region but their major stand is that the area has not been declared a disaster area, meaning the government can handle the situation. For the hundreds of children affected by the mysterious nodding disease in northern Uganda, the ray of hope for a cure seems to be fading.

Nodding disease baffles experts, Video. (6m56s)




In-Depth Infos: 

Global Health Frontline News on Nodding Disease


Global Post on the Syndrome

Related News on Humanitarian News and Analysis

Ministry Records 119 New Nodding Disease Cases by “All Africa”

Govt Sued on the Nodding Disease by “All Africa”

Science Blog on the emerge of the Nodding Disease