Mysterious & Devastating – Nodding Syndrome   Leave a comment

 

 

Mysterious and Devastating - Nodding Syndrome

Lubiri Village (Pader District), Uganda – Nodding Syndrome (NS) is a mysterious and devastating neurologic condition which stunts growth, causes its victims to nod (repeatedly dropping their heads forward), have epileptic seizures (resulting in badly bruised faces and bodies), and causes cognitive deterioration. In severe cases it can result in death. Also at an advanced stage the syndrome causes its victims to wander aimlessly, hence families will tie the person with a rope or chain to prevent them from getting lost, injured or in the case of a young woman raped.

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The condition mostly affects children 5-15 years in northern Uganda, South Sudan and Tanzania – although apparently there are no active cases in Tanzania. According to Komakech Paul, a senior clinical officer at the Atanga Health Centre III in Lubiri Village, Uganda, NS is concentrated in Pader, Kitgum, Lamwo, Lira and Gulu districts in northern Uganda. It has been active in the region since 1997 and the first really bad cases began to appear in 2006, said Mr. Komakech. “It’s associated with river blindness which is linked to blackflies. Blackflies breed in fast flowing fresh water. Sub-counties in the aforementioned districts, which are along the Aswa, Pager and Agago Rivers, are where the families affected by NS live. The link to river blindness is an assumption that’s still being investigated,” stated Mr. Komakech.

New research, presented in the International Journal of Infectious Diseases, suggest that blackflies, infected with the parasite Onchocerca volvulus (the parasite that causes river blindness), may indeed be capable of passing on a secondary pathogen that is to blame for the spread of NS. This new study is from the Institute of Tropical Medicine in Antwerp, Belgium. It documents how the use of insecticides and application of larvicides to rivers (keys to controlling the blackfly population) have affected the rates of NS in areas like northern Uganda.

Mysterious and Devastating - Nodding Syndrome

 

Mysterious and Devastating - Nodding Syndrome

This supports claims by officials at the Atanga Health Centre III, that the area has not seen any new cases of NS since the government launched an intervention program in 2012. Under the program river dosing was started: chemicals that kill blackflies have been used to treat rivers (it continues today). As a second part of the program village health teams administered ivermectin (the anti-parasitic drug used to prevent river blindness) to people in affected communities. The drug clears filarial worms from the body; the larvae from the worms enter humans via blackflies stated Mr. Komakech. Health officials at the Atanga Health Centre III are attributing the absence of new cases to these interventions.

 

Mysterious and Devastating - Nodding Syndrome

 

Mysterious and Devastating - Nodding Syndrome

Nevertheless, despite the absence of new cases health officials have an existing population of young people who require treatment for NS. The primary drug of treatment is sodium valproate. Unfortunately not all patients respond to the drug. It is not a cure. While some children have recovered to the point that they lead normal active lives, if they cease taking the drug they revert.

Mysterious and Devastating - Nodding Syndrome

 

Mysterious and Devastating - Nodding Syndrome

The aforementioned new study while not providing a cure does provide possible answers regarding how NS is spread. The report on the study cites the following: NS epidemics come and go because indigenous populations may become immune to the NS pathogen over time, but that when forced migration moves a non-immune population into an area with a large number of blackflies, NS cases erupt. “Population displacement resulting from civil conflict has preceded NS outbreaks in both northern Uganda and South Sudan,” states Robert Colebunders, MD, PhD and head of HIV/STD Unit, Department of Clinical Sciences at the Institute of Tropical Medicine, professor of infectious diseases at the University of Antwerp.

Mysterious and Devastating - Nodding Syndrome

So while the new study is informative the search for a cure continues. The Center for Disease Control (CDC), in the United States, has been actively involved in trying to discover a cure for NS since 2011, said Mr. Komakech. He went on to describe how officials with the CDC took ten Ugandan children from one family (in Lamwo district) to the U.S. to be examined: five of the children had NS and five were unaffected. The results have not yet been released. “We’re working with something that’s still not well known and our community desperately needs to be informed,” concluded Mr. Komakech.

Mysterious and Devastating - Nodding Syndrome

 

Mysterious and Devastating - Nodding Syndrome

 

Mysterious and Devastating - Nodding Syndrome

 

Mysterious and Devastating - Nodding Syndrome

 

Mysterious and Devastating - Nodding Syndrome

 

Additional photographs by Ric Francis may be viewed at www.ricfrancis.org.

 

 

 

 

 

 

 

 

 

 

 

 

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