Kampala, 30th July 2012:‐ The First International Scientific Meeting on Nodding Syndrome (NS) opened this morning in Kampala, Uganda. Experts from around the world have converged to discuss and find a way forward on a number of issues including a standardized way to define cases of Nodding Syndrome (NS); whether NS is syndrome or a diseases and the association that seems to exist between Onchocerciasis and NS.

While these and other issues are the primary topics of this four‐day meeting, overall, this is the first time that scientists, researchers, policy makers and stakeholders have gathered to review the current knowledge on NS, identify critical research needs and develop plans for its management .

Opening the meeting, Uganda’s Health Minister Dr. Christine Ondoa called on the over 100 scientists present to urgently “harmonize the case definition for NS” which is critical to ongoing surveillance and treatment efforts. She urged the participants to define the key interventions for treatment of NS and to establish a research framework for the syndrome.

Dr. Ondoa reported that the Ministry of Health was notified about the NS in Northern in August 2009 and initially attributed the problem to post‐traumatic stress disorders as the region was recovering from a long civil war.

According to Dr Ondoa, to‐date, the estimated number of affected children by both epilepsy and nodding syndrome is 3,094 in the districts of Lamwo, Kitgum and Pader. Neighbouring districts have also reported cases as reporting and surveillance has been strengthened. 

Dr Ondoa informed participants that in response, the ministry developed a comprehensive multi‐sectoral plan with support from WHO, Centers for Disease Control and Prevention (CDC) and the UK Department for International Development (DFID). This plan enabled the establishment of an inter‐ministerial committee coordinated by the Office of the Prime Minister through which different sectors (including health), guided by their comparative advantage and mandates, take the lead to implement interventions that together contribute to alleviating the health and social impact of NS. Under the same the plan, the Ministry has established three screening and treatment centers in the most affected districts. Dr Ondoa noted that the Ministry also conducts screening and treatment outreach programmes to areas that are distant from the health facilities. In addition, the ministry has commissioned several researches and five of these have been funded.

In his opening remarks the WHO Country Representative Dr Joaquim Saweka noted that the Nodding Syndrome does not occur in isolation, other diseases and conditions including Malaria, Tuberculosis, HIV/AIDS, Hepatitis, among others, do not spare the communities affected by the NS.

In that regard, “WHO insists that the response to Nodding Syndrome needs to be integrated and looked at within the context of the health systems” he said. “We need to strengthen the health systems generally to handle the common diseases and conditions in the country, which will include the Nodding Syndrome. Dr Saweka also pointed out a strong association between NS and poverty. “It tends to affect the rural poor children, and also affects the social and economic wellbeing of the families with affected children” he noted. According to Dr Saweka this leads to low productivity of the mothers and parents as they spend a lot of time caring for the children, making the poor families even poorer, and hence propagating the vicious cycle of disease and poverty.

The CDC‐Uganda Country Director Dr. Tadesse Wuhib reported that his organization has deployed three multi‐disciplinary teams in Northern Uganda have made tremendous progress in the NS investigations. These teams have compiled evidence ruling out many potential causes of NS and also enabled initiation of treatment trials using epileptic drugs. Dr. Wuhib pledged CDC’s support “to work with the people of Uganda and Southern Sudan for as long as it takes to find a solution to this problem working alongside the Ministries of Health and our partners.”

The DFID Head of Office Mr Daniel Graymore said that his organization was involved in NS mainly because “we have a big presence in Northern Uganda and the syndrome could be a big setback to the progress made in rebuilding the region”. In addition, DFID supports global efforts to eradicate Neglected Tropical Diseases to which NS definitely belongs

For more information please contact Benjamin Sensasi, Health Promotion Adviser, WHO Country Office Tel 256-41-334400 Email: sensasib [at] ug.afro.who.int (sensasib[at]ug[dot]afro[dot]who[dot]int)