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

Related Stories

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."

Andrew Harding Article written by Andrew Harding Andrew Harding Africa correspondent

Ebola crisis: Returning to Kigbal village in Sierra Leone

Andrew Harding returns one month on to the stricken town of Kigbal in Sierra Leone, to see how the fight against Ebola has been going.

Read full article

More on This Story

Related Stories

The BBC is not responsible for the content of external Internet sites


This entry is now closed for comments

Jump to comments pagination
  • rate this

    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

    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

    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

    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

    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 .


Comments 5 of 120



BBC © 2014 The BBC is not responsible for the content of external sites. Read more.

This page is best viewed in an up-to-date web browser with style sheets (CSS) enabled. While you will be able to view the content of this page in your current browser, you will not be able to get the full visual experience. Please consider upgrading your browser software or enabling style sheets (CSS) if you are able to do so.