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Nodding Syndrome

Frequently Asked Questions

What’s Nodding Syndrome?

Nodding syndrome (NS), previously known as ‘nodding disease’ or ‘head nodding disease’ is an unexplained neurologic condition characterized by episodes of repetitive dropping forward of the head, often accompanied by other seizure-like activity, such as convulsions or staring spells.

Who is affected by Nodding Syndrome?

The condition predominantly affects children aged 5–15 years and has been reported in South Sudan from the states of Western and Central Equatoria and in Northern Uganda and southern Tanzania. Our Organisation’s case study is currently Northern Uganda, Area of Focus: Kitgum District, Tumangu Village. There are many other affected zones that also require our help. As of June, 2023: other 5000 epileptic cases have been reported and 174 deaths registered since 2012

What are the characteristics of Nodding Syndrome?

During episodes, a child stops feeding and appears non‐responsive, with or without loss of consciousness. There is deterioration of brain function in some victims, and malnutrition with growth retardation in the majority of cases.

What is the current situation of Nodding Syndrome in affected communities?

Two and a half decades since the first cases were reported in the internally displaced people’s (IDP) camps in Kitgum and Pader districts in then strife-torn northern Uganda, the exact cause of the nodding syndrome remains largely unknown today. From 2012, Nodding syndrome screening and treatment centres were opened in northern Uganda. However, as of 2023, they are no longer operational due to lack of funding and other unclear reasons.

What can we do to help the affected children and families?

Together with your help, we at Nodding Relief Organisation (NRO) will focus on creating awareness of NS and offer relief to those suffering in form of food and other basic needs. NRO also struggles to bring an end to Nodding Syndrome through achieving our other objectives.

Is there any hope for the suffering?

YES, treatment is very possible and some children have survived this deadly mystery illness. While anti-epileptic drugs may give relief from seizures in some children, the effectiveness of these drugs is questionable. Therefore, the children have to be taken of in good conditions and given a balanced diet rich in Vitamin B6

What can you do as an individual to contribute towards our cause?

There are many ways to do this; you can support us through our fundraisers and donate a considerable amount of money towards our projects, you can volunteer with us and push the notion to bring an end to Nodding Syndrome. You can reach out to us anytime via our email address: [email protected] or visit our Contact page for alternative ways, please we are always ready to address any form of enquiries.