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: firstname.lastname@example.org; email@example.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.
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