Nodding syndrome raises its head

In a previous blog, Mystery
disease outbreak in Ethiopia solved
, I mentioned in passing Nodding Syndrome (NS), a neglected
condition that is epidemiologically associated with onchocerciasis and affects children
5-15 years old. 

The syndrome causes epileptic seizures where the afflicted
suffer from involuntary head nodding, usually triggered by food or cold. They end
up severely disabled and, without treatment, finally die.   It is
devastating communities in northern Uganda, South Sudan, Tanzania and Cameroon.

As I reported at the time: “The USA’s Centre for Disease
Control is working to identify the cause: so far, the best guess is that it’s
linked to the parasite that causes river blindness combined with an autoimmune
reaction, and exposure to chemicals could predispose.”

I now hear that an international workshop was held on this
subject in Uganda, First
International Scientific Meeting on Nodding Syndrome (NS)
, with
the key objective to set a standardized case definition for suspect
and probable cases of NS.

I also hear that the journal African Health Sciences is to
devote an entire issue to the syndrome and is currently looking for authors to
contribute papers on NS/epilepsy. (Very necessary since there are literally just
a handful of research papers on the subject so far).

You can submit papers online to the journal at:  http://mc.manuscriptcentral.com/mums-ahs
and
queries can be sent to: James K Tumwine, Editor in Chief African Health
Sciences: Email: kabaleimc@gmail.com;
kedgart@gmail.com;

I acquired this information through my membership of HIFA2015 and would encourage readers to
join this excellent forum of health workers, publishers, librarians,
information technologists, researchers, social scientists, journalists,
policy-makers…(you name it we have it).  HIFA2015
is a campaign and knowledge network with more than 5000 members
representing 2000 organisations in 167 countries worldwide, with
the aim that “By 2015, every person
worldwide will have access to an informed healthcare provider”.

You might even wish to become a HIFA2015
Country Representative
: their
role is to engage new members
and champion HIFA2015 goals in their countries. We are currently looking for  country representatives in China, Central and
Eastern Europe, Central Asia, and Eastern Mediterranean Region. YOU can
register your interest when you join via the website.

References

Uganda: Nodding Syndrome
Symptoms Controlled, Hunt for Cure Continues

Investigation into
the Nodding syndrome in Witto Payam, Western Equatoria State, 2010.
[South
Sudan] This url takes you to our Global
Health database
record

CDC Responds to Nodding
Disease in Uganda
  Youtube video

Mystery disease in Ethiopia solved: linked to weed toxin

Imagine this…

A mysterious disease terrorising your community, not infectious but spreading nonetheless, and killing your relatives and neighbours. All you want to do is pack your bags and flee. Worse, when your plight comes to the attention of the health authorities, they are stumped and its not going to be easy or quick to solve.

A recent example of this kind of illness is “nodding disease (South Sudan, Uganda, and Tanzania), which affects children 5-15 years old: they suffer epileptic seizures which causes their heads to nod, and they end up severely disabled and finally die. The USA’s Centre for Disease Control (CDC) is working to identify the cause: so far, the best guess is that it’s linked to the parasite that causes river blindness combined with an autoimmune reaction, and exposure to chemicals could predispose.

Other examples of non-communicable disease outbreaks

On Global Health, I found there are outbreaks going back to 1911 (epidemic dropsy) but more recent ones were in India,  Bangladesh, Nigeria, Brazil, China, Afghanistan and even the USA.

 What are the likely causes for these outbreaks? The body of research, as found on databases like Global Health, tells us that they could be contamination of food and water supply, exposure to chemicals or heavy metals in the environment, or even use of traditional medicine.

 Mystery liver disease in Ethiopia with a ‘happy’ ending

Can public health authorities in low-income countries solve & stop such outbreaks?   Yes. In 2005, in Ethiopia, a 4 year long outbreak of liver disease in Tseda Emba, a small village of the Tahtay Koraro district of Tigray, finally reached the attention of the Tigray Health Bureau (THB). Now, in 2012, the multidisciplinary and one-health approach they initiated has “solved” the mysterious illness, significantly reducing new cases. 

 The research work was the subject of an entire session at the recent World Congress Public Health (WCPH-2012) in Ethiopia, and is now published as 5 papers in the supplement to April 2012’s edition of Ethiopian Medical Journal (EMJ). [Abstracts to these papers will be available on Global Health]. It demonstrates the relevance of the one-health approach to public health in low-income countries and is a fascinating detective story….

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Is there a role for law(yers) in public health?

ITS not often that speakers forgo the chance to present in favour of opening up debate, but this is exactly what happened here at the World Congress Public Health 2012 (Addis Ababa, Ethiopia,Tuesday April 24), in the session “Law: a public health tool”. Moderator, Michele Forzley, chose not to talk on access to medicines in favor of a longer group discussion, following presentations from 3 African speakers on law related to women’s rights, public health emergencies, and setting up NGOs.

Split into small groups,  we, the audience, were asked to identify public health issues which persisted despite knowing the cause and cure, and despite the existence of laws providing protection. The speaker panel then commented on the identified issues, relating them to existing law in their various countries and suggesting why the law had failed to protect.. Michelle Forzley supplied the international perspective. 

Issues identified by the groups related to LMICs (low and middle income countries) and included khat use by young people in Ethiopia; environmental pollution from mining; migrant rights; counterfeit drugs, poor quality breast milk substitutes; training needs of public health workers to enable them to defend and advocate effectively for public health law enforcement; and food labelling/quality, particularly of imported foods.

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