Uganda's nodding syndrome

Health workers try to find the root of a neurological illness.

A mysterious and sometimes fatal illness known as nodding syndrome has affected more than 3,000 children in northern Uganda. Those who suffer from it are plagued by frequent and involuntary nodding, neurological deterioration, malnutrition and stunted growth. The syndrome was first detected in Tanzania fifty years ago and the first reported incident in Uganda was in 2009. Public health officials are still searching for clues that will help solve this debilitating illness.

In this episode of The Stream, we speak to Dr. Annet Alenyo, an adviser to the maternal and child health program for World Vision.

What do you think? What more can be done to find a solution to nodding syndrome? Send us your thoughts and comments on Facebook or Twitter using #AJStream.

View the story "Uganda's nodding syndrome" on StorifyUganda's nodding syndromeHealth workers try to find the root of a neurological disease.Storified by The Stream · Wed, Aug 15 2012 10:09:30The mysterious and long-neglected illness found mainly in northern Uganda has baffled medical experts in the country and abroad. This video from IRIN sheds light on the personal and professional struggles against nodding syndrome in one village:Neglected Diseases - Nodding diseaseirinfilmsNodding Syndrome cheat-sheetAJstreamRecently the World Health Organization held a conference in Uganda with a special focus on the illness. Experts agreed on a uniform name - nodding syndrome as opposed to "disease" since a cause is not known - as well as a plan to establish research strategies to curb its spread.undefinedWhoVia AllAfrica:Peter Spencer, a professor of neurology (School of Medicine) at Oregon Health and Science University in the U.S. said the new comprehensive study would involve examining food , water consumed by the nodding children, education, environment, nutrition and toxins, among others. In South Sudan and Uganda where the disease is concentrated among children who were raised in internally displaced peoples' camps, Spencer said the researchers would focus on establishing the environment in which they grew up, the food they were fed on, untreated infections, soil and cultural beliefs, among others. The experts also intend to use the new research to establish the type of the syndrome and whether the syndrome is neurologic, psychiatric or both.allAfrica.com: Uganda: Nodding Disease - Experts Embark On New ResearchThe United States Centers for Disease Control (CDC) found that most children with nodding syndrome lived close to the Yei River, a hotbed for another prevalent illness: river blindness (onchocerciasis). In one study, the majority of children were found to harbour the same parasite that causes river blindness.
Children struggling with Nodding Syndrome could benefit from epilepsy medicine, but also need strong support programsAJstreamAlthough the government announced it would set up special, accessible treatment centers, nodding syndrome has yet to gain the attention and the funds that have been allocated to fighting the recent outbreak of Ebola, which has so far killed 16 people in the country.Reuters reports that funds requested to fight nodding syndrome were not included in the government's latest budget proposal:A request by the Health Ministry for 3.8 billion Ugandan Shillings (about $1.5 million) to fight the disease was not included in the supplementary budget recently submitted to parliament for approval. The finance ministry, which said the request was late, has instructed health authorities to reallocate funds from their existing budget until the next supplementary budget. "It is very sad," said Beatrice Anywar, an opposition member of parliament for one of the most affected areas. "It shows how the government really doesn't care."Mystery disease devastates northern Uganda | ReutersOn social media, Ugandans have been angered by what their government isn't doing:@kkiang @AJStream Our goverment has not put in enough effort to stop the spreading of this disease. Its so sadNkalubo Edwin Eric SGov't launches toll-free phone lines for districts affected by nodding syndrome to respond to needs of victims. And those without phones?Eyotaru Olive YemimaGov't z relaxed on nodding disease in northern uganda bt pays much atention on ebola in western uganda.Ochandi Michael@yasmineelsabawi there hasn't been enough research, but local leaders have talked about chemical weapons used by the govt against the LRAHellen Otiiin order to encourage MPs do their work, their allowances are reported to have increased by 50 % . In their defence some legislators claimed government has lots of money and can afford the rise but if it was nodding disease or ebola the same government would be very broke to deal with such epidemics .... funny UgandaFowode UgandaUgandan MP Mary Karooro Okurut also took to Twitter, insisting that some progress has been made:nodding syndrome:children are responding well to the treatment, inspite of the few challenges that still exist.Mary Karooro OkurutOthers shared their thoughts on how under-reported nodding syndrome is:@lisa_fletch @AJStream glad you're covering it, not sure why int'l response has been so muted to this diseaseHellen Otii#Editing footage I shot this year of children with #Nodding #Disease in Northern #Uganda and it's killing me. The sadness & the suffering...Child Troopers@yasmineelsabawi The disease still requires extensive research to combat it effectively. That conf is only a stepping stonealfred_doy

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Uganda's nodding syndrome

Uganda's nodding syndrome

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