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    'Nodding disease' confounds experts, kills children

    Patrick Anywar, 14, lies curled up naked in the dust and midday heat of a Ugandan village, struggling to look up at his younger brother and sister playing in front of the family home.

    After a minute's effort to face his siblings, Anywar's head slumps onto his chest and his emaciated body is gripped by convulsions.

    Anywar is one of more than 3,000 children in northern Uganda who are suffering from a debilitating mystery ailment known as nodding disease, which has touched almost every family in the village of Tumangu.

    For several years, scientists have tried and failed to determine the cause of the illness, which locals say has killed hundreds of youngsters.

    What they do know is that the disease affects only children and gradually devastates its victims through debilitating seizures, stunted growth, wasted limbs, mental disabilities and sometimes starvation.

    Anywar's mother, Rugina Abwoyo, has already lost one son, named Watmon, to the disease in 2010. Now she says she can do little but watch on helplessly as another child slips away.

    "Before he was walking and running like other children, but now someone always has to stay home to look after him," Abwoyo told AFP. "The disease is terrible -- it does not let him drink or eat by himself."

    Walking along footpaths cut through the sorghum plantations, Joe Otto, a volunteer health worker, explains how nodding disease has ravaged Tumangu, about 450 kilometres (280 miles) north of the capital Kampala.

    "There are 780 people living in this village and we have 97 cases of the disease. It has affected almost every family," Otto, 54, told AFP.

    Whenever sporadic deliveries of medicine arrive at the local health centre several kilometres away, Otto pedals his bicycle to fetch the drugs. But he knows that they only offer a short-term solution.

    "We are giving out drugs for epilepsy, like carbamazepine, but this disease is different from epilepsy," Otto said.

    Instead, as the disease has torn through their community, local residents have moved from fear to a grim acceptance, Otto says.

    "We started saying that the patient who had died was the one who had been cured, because finally they were at rest from this painful disease," Otto said.

    Scientists are trying to find a cure: since 2010, researchers ranging from epidemiologists to environmental experts, neurologists, toxicologists and psychiatrists have carried out a range of tests.

    Investigations have looked at possible links between the disease and everything from a parasite that causes river blindness, to malnutrition and the after-effects of a civil war that ravaged northern Uganda for decades.

    "We looked at all this, but unfortunately we were not able to pinpoint any significant contributing or risk factors," said Miriam Nanyunja, disease control and prevention officer at the World Health Organisation in Kampala.

    "The search for the causative agent is still ongoing," she added.

    Often the results have thrown up more questions than answers. Scientists do not know if the disease is linked to similar outbreaks in neighbouring South Sudan and Tanzania.

    Efforts continue to understand if the disease is still spreading or has peaked -- and why it is seems confined only to certain communities.

    Last month, after pressure from lawmakers from affected areas, Uganda's health ministry produced an emergency response plan to try to identify and control the disease.

    However, Nanyunja says that while the search for the cause and a possible cure goes on, for now, doctors can only focus on trying to alleviate the symptoms.

    "There are many diseases that we continue to treat symptomatically, without knowing the exact cause," Nanyunja said.

    But for Patrick Anywar, any attempts to curb or cure the disease may come too late.

    "We are hoping that the doctors work very hard to get the cure for this disease," his mother Abwoyo says.

    "There is no future for us as so many children have already been affected, but we hope that our youngest can be saved."

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    33 comments

    • Ak Tech  •  Singapore, Central Singapore  •  3 months ago
      To the medical team: " please dont give up into yr research to help them, pls work harder. U have everything u need there , this kids here have only HOPE ". Thanking U in advance.
    • Benedict  •  Singapore, Central Singapore  •  3 months ago
      My Friends, Let us pray for our brothers and sisters in Uganda. We are far more lucky to these people. Lets unite as Human, and reach out to help these people. I beg you it is time do Good things for these people. May God Bless Us All
    • Locals really love FTs  •  3 months ago
      why does everyone mention god??? if you really want to help then donate or just shut up.
    • factsfinder  •  Singapore, Central Singapore  •  3 months ago
      The problem with capitalism is that big companies will focus their research on projects which will bring in money. This type of disease which happens in poor country often got neglected.

      There are many willing souls, but fund is needed to research.

      There was this argument on whether the country so spend money on projects to combat sickness prioritised by the need of the country or by the demand of the international market.
      • Dr. Holystein 3 months ago
        New mutant strain of microbe, like Bovine spongiform, Burkitt's lymphoma, Esptein-Barr or HIV at their beginnings. Almost all these diseases seems to originate from Africa, maybe due to climate and life-style practices. ( I mean what they could have been eating ... like a gorilla or a rat .... )

        The guideline over choice of meat for food has been found in many religion, like the Jews and the Muslims do not consume pork or some other "unclean animals" could be successfully keeping the community away from such diseases.

        There was also this prion disease in PNG because they feed on the human brain of their enemies they slaughtered. So, we should wait for the investigators to publish their findings. What else can we do, but to keep good habits for the community and others to sustain healthy living.
    • doot  •  3 months ago
      So sad. So so sad. I hope the doctors will find a cure real soon.
    • my friend  •  Kuala Lumpur, Malaysia  •  3 months ago
      this are the places the Relief organization should go and help, what for go to places to get publicity!....
    • Noble  •  3 months ago
      Ya Allah! Pls save these children from this severe disease. Ameen!
      • susubesarbundar 3 months ago
        Yes, save them....
      • Nisa 3 months ago
        Amin..
      • Ancient 3 months ago
        where is Allah now...you can pray and plea all you want...this being called allah will never lend assistant....coz he and GOD does not exist....only exist in our minds......
    • Disclaimer  •  Singapore, Central Singapore  •  3 months ago
      Not too long ago, I saw a documentary on cannibalism on cable TV.
      I think it was in Uganda - I could be wrong.
      There was a sector of the population which adhered to cannibalism ( no doubt bcos of starvation), and another sector which did not.

      A few generations later, the children of the cannibals were stricken with this disease.
      The non-cannibals were not affected. It was a clear observation though they could not identify a particular medical strain as the cause.

      You make your own conclusions....
      • Andrew Kwa 3 months ago
        I watch that too...it was a highland tribe in Papua New Guinea.Those who ate human flesh pass on the disease,only to manifest at a later stage,where the victims were shaking uncontrollably,and eventually collasped.But that's different scenario,the cannibalism occurs years back when the people are not so civilised(yet).
      • Boon Xiang 3 months ago
        The symptoms may be similar, but I believe that disease you are referring to is the Kuru disease.
        This should be a different case. Probably some new disease because Man's understanding of nature is still so limited.
      • Ricky 3 months ago
        but the symptoms sounds like its some form of prion disease, similar to kuku disease. Just that prion proteins might be found in different parts of the brain. And similar to other prion diseases, no known definite cause has been found out
    • oldbandit00  •  Singapore, Central Singapore  •  3 months ago
      Imagine if half of the money that singapore government plans to invest in SMRT is there to help them...
    • dwine  •  Atlanta, United States  •  3 months ago
      What is this another type of experimental project tested in Africa? then once proven that there is an effective counter-medicine to resolve the illness it will spread in the whole world?
    • paddyfields  •  Singapore, Central Singapore  •  3 months ago
      Were these children given any jabs/ injections under the name of immunization or protection by the so called local or international welfare or health care organizations when they were infants? Was it a deliberate act to reduce their numbers? It's possible folks.
      • Zorro007 3 months ago
        They haven't found the root of the problem, so what jab to give is unsure?.
    • CubanCat  •  Singapore, Central Singapore  •  3 months ago
      the children should not be allowed to walk barefooted there.. all kinds of parasites can creep into the foot skin from the ground..
    • sean  •  3 months ago
      why always Africa?
    • Ricky  •  Singapore, Central Singapore  •  3 months ago
      sound like its some kind of prion disease
    • ask why  •  Singapore, Central Singapore  •  3 months ago
      The main cause is poverty..other contributing causes like lack of hygiene and poor knowledge of contagious diseases..
    • Kynan  •  3 months ago
      Maybe it is a combination of a parasite and a lack of some type of protein that the parasite feeds off on, which the children's body needs?
    • John  •  Singapore, Central Singapore  •  3 months ago
      S'poreans are also afflicted with it! Evereytime PAP say A we do A ,they say B we do B!
    • Frustrator  •  Singapore, Central Singapore  •  3 months ago
      Now, rouge countries may try to import the virus for war!
    • UnWanted  •  3 months ago
      Lord, have mercy on us..and please Bless this Country specially those family that affected with the deseased.. :'(
    • lim  •  Singapore, Central Singapore  •  3 months ago
      Poor souls...god blessed them.

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