Editorial: Nodding Syndrome: Challenges for a Bizarre Condition

Author(s): Dr. Edward Eremugo Luka

In September 2010 the Government of Southern Sudan’s Ministry of Health sent a team to Kediba, Witto Payam, Mundri East County in Western Equatoria State after reports that there was an increase in the number of cases of a bizarre disease known as ‘nodding syndrome’ in the area. The team found 96 cases registered in the internally displaced camp1 (see the main article in this issue).

The syndrome has been known for long time in the communities of Western Equatoria State. What has been lacking is a consistent programme to address it. Children have been physically and mentally affected by the syndrome and communities are consumed with fear. The exact prevalence of nodding syndrome in Southern Sudan is unknown.

Much effort is needed to understand the pathophysiology so that not only a cure can be found, but also prevention strategies can be put into place. Studies in Uganda and Tanzania have linked the syndrome to Onchocerca vovulus and abnormal EEG suggested an epileptiform mechanism.2 Low blood levels of vitamin B6 may also play a part in the syndrome development.3

A large study must be done in the affected areas. The Ministry of Health needs to work closely with the World Health Organization and the Centers for Disease Control and Prevention (CDC) in addressing this problem. Let the investigations in Witto Payam be a catalyst for more action. At least, the communities want to see that something is being done about this devastating condition.

Dr. Edward Eremugo Luka

[email protected]


  1. Lagu J, Akim T, Lako A, Gordon Abe, Lejeng L, William G. Investigation into the Nodding syndrome in Kediba County, Western Equatoria State in 2010 Southern Sudan Medical Journal 2011; 4 (1):3
  2. Sejvar J, Foltz J, Dowell S. Nodding disease in Uganda – new clues, persistent enigma. Scientific Seminar Series Presentation, CDC, 2010.
  3. Winkler AS, Friedrich K, König R, Meindl M, Helbok R, Unterberger I, Gotwald T, Dharsee J, Velicheti S, Kidunda A, Jilek-Aall L, Matuja W & Schmutzhard E. The head nodding syndrome--clinical classification and possible causes. Epilepsia. 2008 Dec; 49(12):2008-15. Epub 2008 May 21.