Nodding Syndrome Alliance

January 30th, 2021 marks the World Neglected Tropical Diseases (NTDs) Day, a day in which we celebrate the progress made towards the control of NTDs yet acknowledge and attempt to respond to the daunting challenges faced in the management and elimination of these conditions. The spread of diseases is one of the many and most serious effects of the combination of poverty and war, and South Sudan, as the protagonist of one of the worst ongoing humanitarian crises, is not spared. In this regard, one year ago, the Nodding Syndrome Alliance was introduced and undertaken and is today presented on the occasion of World NTDs Day.

The need for an alliance stems from the necessity to shed light on the weight of neglected tropical diseases (NTDs), and specifically of the Nodding Syndrome, in one of the most disadvantaged countries in the world. South Sudan in fact hosts at least 12 of the 20 worldwide recognized NTDs. NTDs are a diverse group of tropical infections which are common in low-income populations in developing regions of Africa, Asia, and the Americas. Paradoxically, these neglected—thus ignored, overlooked—diseases, affect over one billion people.

Nodding syndrome (NS), which gets its name from the characteristic nodding of the head associated to it, although not officially an NTD, is a neurological condition with unknown etiology strongly associated to a neglected disease called onchocerciasis (aka “river blindness”). It was first documented in the United Republic of Tanzania in the 1960s, then later in Sudan in the 1990s and in northern Uganda in 2007. Despite numerous and extensive investigations over time, very little is known about the causes of the disease. However, one of the possible causes is a parasite (Onchocerca volvulus) carried by a species of blackfly, which breeds among the plants that grow on riverbanks.

The age of onset of the syndrome typically ranges between 5 and 15 years old, damaging children during crucial phases of their growth, to the point of producing devastating impacts on the development of the brain and a consequent loss of self-knowledge, of the ability to speak and to live independently from their caregivers. Children’s conditions gradually worsen. In many cases, children suffer more seizures a day and develop severe physical deformities, behavioral issues such as apathy or aggressiveness, psychiatric disorders and/or loss of all cognitive faculties. Ultimately, marginalization, mistreatments, neglect, and malnutrition emerge as some of the long-term consequences of NS. To date, the number of cases of NS is unknown, as the data available is limited and conflicting.

From the above, stems the need for the NSA. NSA, or Nodding Syndrome Alliance is the name of the consortium that proposed and currently implements a project aimed at responding to the specific health, food security, education, and livelihood needs of the people with epilepsy and Nodding Syndrome (NS). It does so through an integrated and multisectoral action, aimed at strengthening people’s resilience and that of their communities, in Western Equatoria, South Sudan.

The consortium is formed by the organizations Amref Health Africa, Doctors with Africa CUAMM, Light for the world, OVCI and SEM. The NSA is supported and co-financed by the Italian Agency for Development Cooperation (AICS) and the BAND Foundation (USA), and the implementation of the project is carried out by the entire consortium—each partner taking care of a defined set of activities. Moreover, new members recently joined the alliance, although they are not officially partnering under the AICS grant: University of Amsterdam, University of Antwerp, and CBM.

The alliance will attempt to achieve its goals through a variety of activities, which include training of community health volunteers and support in identifying, referring, and monitoring suspected or new cases of NS and epilepsy at household level, diagnosis and treatment of people suffering from epilepsy and NS, promotion of access to education and social inclusion of young people with NS and epilepsy in public primary schools – and many more.

During its first year of activity, the alliance has already achieved remarkable results. Among these, 36 community volunteers were trained on epilepsy and Nodding Syndrome, spread out on the territory, and supported, and 808 people with epilepsy / NS (47% F, 53% M; of these, 261 are minors, 51% F, 49 %) were taken care of at community level and followed and assisted regularly at home. 3 clinics dedicated to epilepsy treatment were also established and initiated, with 1,692 patients currently undergoing treatment; among them, 508 are minors (52% M, 48% F). The 3 clinics are adequately equipped and constantly stocked with medicines, including antiepileptic and anticonvulsant units.