The syndrome stealing Uganda and South Sudan's children

 
Okello Reagan, 11, who is suffering from nodding syndrome, sits with his peers in Akoya-Lamin Omony village in Gulu district, Uganda Nodding Syndrome exclusively targets children, leading them to eventually waste away

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It is deadly and indiscriminate. And it is killing children across northern Uganda and South Sudan.

But I'm not talking about Joseph Kony's Lord's Resistance Army which, despite its sudden brush with global infamy, has not been seriously active inside Uganda for some six years.

I'm referring instead to a mysterious disease that I first encountered in the region in 2003. It is called Nodding Syndrome, and I was shocked to discover this week that nearly a decade since it was first detected, almost no progress has been made in identifying, treating or containing the disease.

Nodding Syndrome targets children exclusively, causing its victims to spasm uncontrollably and eventually to waste away and die. Many thousands of children are believed to be affected.

Scott Dowell - an American doctor I was in contact with in Asia where he was involved in the global battle against bird flu - is now helping the Ugandan authorities to fight Nodding Syndrome.

"It's frustrating not knowing the cause. I was hopeful for a quick answer when we first started studying the disease in 2009," he told me, on the phone from the Centers for Disease Control and Prevention (CDC) in Atlanta, USA.

Instead, like several other neurological disorders, Nodding Syndrome remains a complete mystery. "It could take a while to crack this," he admitted.

Watum Kenneth, 13, who suffers from nodding syndrome, stands in Akoya-Lamin Omony village, Uganda Doctors initially suspected the syndrome was psychological, rather than physical, in origin

Initially, the CDC suspected it might be a psychogenic episode - something like mass hysteria. But brain scans quickly confirmed that they were dealing with a disease that causes measurable brain atrophy.

Has the outside world been slow to investigate? It is fair to assume that if a disease were killing children in Europe with such brutal efficiency, more attention would have been paid to it by now.

The World Health Organization, Unicef and the Ugandan Health Ministry are closely involved, but a Ugandan official in the north of the country, William Oyet, expressed concern to me that "the number of cases is increasing".

Dr Dowell says he cannot speak for what happened before 2009, but insists that Nodding Syndrome is now "high on the short list of about half a dozen" mystery diseases that the CDC is targeting.

"We'd really like to get to the bottom of this… because it's got a big impact on public health. It's hugely important to the children and families affected.

"It's also interesting from a scientific point of view - the fact that we can't figure it out. And thirdly, we are kind of hooked. We've worked with the population over a couple of years and so we're really committed to these communities," he said.

The CDC has confirmed 194 cases, but has heard credible reports of "many thousands" more affected children.

Unlike bird flu, Nodding Syndrome shows no indication of being transmitted from person to person, so "we don't have the sense that it is likely to be a threat to the rest of the world in the way bird flu is", said Dr Dowell.

"We have the funding we need to do our investigations. We are pursuing a number of leads and haven't run out of leads," he said.

But when it comes to helping communities affected by the disease, Dr Dowell is less optimistic. "The affected villages… are now facing a future with large populations of disabled kids, with all the cost implications for families and communities. That part is clearly not funded."

 
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  • rate this
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    Comment number 120.

    Of course we need to help others where we can, but equally hold accountable those who are responsible.
    Has anyone checked to see if free vaccination programs have been carried out in the affected areas? They have been known to go horribly awry at times and often contain highly toxic preservatives which can cause brain/neurological damage.

  • rate this
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    Comment number 119.

    And what about the Asian girl who was sold as a prostitute in Uganda? I read it on the German news-site Deutsche Welle, but not so far in the UK media.

  • rate this
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    Comment number 118.

    I am Ugandan and am disgusted that our governments(in subsaharan Africa especially) cannot sort(or try) these issues out without Western help. What research, data have been gathered up until now. Whats been done to date? Our leaders must start planning and dealing with our issues and only cry for help only if its really needed. Leadership is about taking responsibility not just taking big cheques.

  • rate this
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    Comment number 117.

    I agree with you Kaloys - it takes expensive R&D . My life-long ambition has been achieved to been to bring a low cost larvicide to the market WITHOUT Chemicals. The Far East, the Sudan confirm again that mosquitoes have developed resistance to certain chemicals. We will launch this in Accra on the 20th April, 5 days before World Malaria day, USA Scientists will report on test and field trials.

  • rate this
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    Comment number 116.

    I do not agree with comments about the H2O based vitamins as being a likely cause due to shortage of H2O. I was born in the area and know that surrounding counties have more serious H2O shortages. The problem has always been unclean water from the ground.Why now? NGO's have delivered massive aid in the region. Army training by local armies and the US Marines (thallium?) has taken place .

  • rate this
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    Comment number 115.

    What a distressing story. Thanks to the BBC for publicizing this. Our politicians seem only to act on the basis of opinion polls, not on what is just. So this may help build momentum for pressure to act.

    Politicians waste so much money - here, if any, is a just cause.

    (I still wouldn't downplay the vile LRA, which haunts that region like an evil parasite.)

  • rate this
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    Comment number 114.

    there is (as i mentioned in the 2003 post too) a correlation between nodding syndrome and a parasite from black flies that breed along water channels in the area. so it's an indicator, but apparently not a full explanation. same goes for vitamin B6 deficiency, according to the CDC.

  • rate this
    +1

    Comment number 113.

    @ Bootgates

    I'd very much doubt that, B1 deficiency usually results in known syndromes such as so-called Beri-Beri (which result in a mixture of neurological symptoms) and Wernicke's Encephalopathy which we see quite alot in the UK with alcoholics.

    The picture here is different, it's a disease which seems to have come out of nowhere. This probably indicates a newly emerging infectious disease.

  • rate this
    +1

    Comment number 112.

    A lot of thing happened there from wars to deseases. They really need to bring up their people to another level. That mean a change. Bring in education or "forcing them for educations". Remember, to teach someone fishing is not by giving them fish but give them a hook.

  • rate this
    +1

    Comment number 111.

    What is the point of armchair medics speculating as to the cause of this alleged disease? They know less than a Ugandan road-sweeper, at least he's there! The immediate need is for facts - a period of observation and detailed diagnosis; and there are lots of resources for that. But it can only happen if the locals ask for it. Telling them that they are useless doesn't help!

  • rate this
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    Comment number 110.

    The International Society of Infectious Diseases, based at Harvard University in the USA, investigates emerging diseases such as this one. So also do the Centers for Disease Control, and the National Institutes of Health. I hope that's enough effort for "Shendor" from one country-- to say nothing of US doctors who give weeks out of their lives every year to help destitute people overseas.

  • rate this
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    Comment number 109.

    Wikipedia article mentions this was first noticed in the Sudan in the 1960's.

    Curious why the doctors are not doing gene mapping.

    PBS - Black Plague - mutated gene - two copies you didn't get the plague, 1 copy you got it but survived - 0 copies you died. Same gene may play a apart in aids - same way.

  • rate this
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    Comment number 108.

    There are a few sick people here making jokes, unfortunately there will never be a cure for people like you.

  • rate this
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    Comment number 107.

    Would I be correct to assume there is large scale gold mining activity near the outbreaks of this syndrome?

  • rate this
    +1

    Comment number 106.

    I'm sorry but this reminds me of the mysterious illness that is affecting several US NY children. Did anybody else think about this?

    http://newyork.cbslocal.com/2012/01/27/mystery-illness-leaves-teens-with-twitches-spasms-at-upstate-n-y-school/

    I've not really compared the two yet, but couldn't help but to make the association!

  • rate this
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    Comment number 105.

    microfilaria (parasitic larvae of a particular species) are found in approx 70-80% of cases, much higher than the population without nodding disease strongly suggesting it is involved. However the microfilaria isn't found in the brain of patients, which suggests an autoimmune pathway. On top of this other areas with high microfilaria prevalence don't have nodding syndrome. A very complex problem.

  • rate this
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    Comment number 104.

    if Nodding Syndrome was to effect our kids we will be spending millions to find a cure but hey here we are just commenting about their plight in 2 poor African countries instead of calling our MPs to bring this issue up at their next meeting and try to get our prespective governments to do something about it today rather then have more statistics how many millions of kids died

  • rate this
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    Comment number 103.

    Just look at the countries of the people affected. Generations of malnourished individuals living in deplorable conditions. The reasons why are all caused by the exploitation of the land and it's people for monetary gain. With a incomplete chemical structure the human body will fail before puberty in a continent that the natives of it do not own and govern.

  • rate this
    -1

    Comment number 102.

    It's obviously a neurological disease. I wonder why they call it nodding disease. Maybe sufferers nod and nod their lives away ahhahaha!!!

  • rate this
    0

    Comment number 101.

    we easily forget how recent it was that europen countries held dangerous sway in africa, the uk has an especially unpleasant track record there. one of churchill's main reasons to go to war with germany was his worries that hitler would take the british colonies in africa. the world has a debt to africa and we also can not idly watch china repeat the errors of europe's ways..

 

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