Acholi Resilience

Nodding Syndrome

Decades of conflict have had vast arrays of catastrophic effects on humanitarian and economic stability of Northern Uganda (NU). These problems range from countless loss of lives, abduction of children for child-soldiers and sex slaves for Lord Resistant Army (LRA), collapse of local economy, dilapidation of civil infrastructure, loss of property (livestock and homes), breakdown of healthcare and education facilities, loss of cultural structure and norms, loss of skills among youth and dependency on hand-outs from international donor organisations. Moreover, the squalid Internal Displaced Person (IDP) camps were breeding grounds for diseases, rapist, pedophiles, and abductors that caused the death of over 1,500 people weekly resulting into thousands of orphans. For more than two decades, they waited for the war to end, meanwhile, their villages, crops, and livestock were destroyed and or looted.
In 2008, the Uganda government released Acholi people from the camps to go home. The camps were homes for Acholi people for more than 20 years where they were provided with outdated food, expired medications, and poorly resourced education. After 20 years in camps, most people forgot to work and to engage in economic development. When Acholi people returned to their land, they had no food, no animals, no schools, no hospitals, and worse no homes to go back to. They also brought back something even more insidious: a disease that began attacking thousands of children between the ages of 5-15 years old, known as Nodding Syndrome (NS). 

Nodding Syndrome is a debilitating medical condition that affects cognitive ability, causes cerebral palsy, decreased physical ability with no emotional and or social ability to interact.

There is some anecdotal evidence purporting that chemical weapons might have been used during the conflict in an attempt to eradicate Acholi people from NU. However, research indicates ingestion and exposure to toxins and toxicants in food provided in the IDPC might be responsible for the spread of NS in NU. Presently, a large proportion of children are born healthy but when they turn 5 years old, they develop NS disease. There is no current research output underpinning the actual cause of NS and no clear record of the number of children affected.

Nodding Syndrome (NS) is largely unknown around the world. Majority of people especially outside of Uganda have never heard of NS and are unaware of its devastating consequences to the victims. Nodding Syndrome causes children to waste away, be tied to trees to prevent wandering which often leads to accidental death (refer to appendix). This is because there are no safe places of care for the victims. As a result, parents frequently tie their children to trees or posts for their own safety to keep them from wandering off into dangerous places. The victims of NS require 24 hours care in order to meet their needs and prevent occurrence of fatal accidents. Most days they suffer from seizures lasting up to 3 days spreading over 2 months. During seizures, they cannot control their body movement and are prone to wandering off where they can accidentally fall into open fires or drown in bodies of water causing disfigurement or even death. Northern Uganda is prone to wildfires and flush flooding, which are harmful to the victims of NS. Each episode of seizures attenuates the victim’s mental capacity. Over the course of time, many children develop severe growth retardation; a child who is 12 or 13 years of age has the appearance of a 5-year-old. Children lose control of their bodies and are no longer able to perform basic acts of bathing, feeding and or dressing, and eventually regress to child-like stage of development.
Most victims of NS require full time care, and this leads to parents ceasing work or farming. The parents are always on the guard for episodes of seizures. Consequently, they are unable to attend to their farm due to the burden of care. Meaning, they have no food all year round and are always begging for food. The families affected are not able to engage in economic activities due to the caring responsibility. As a result, most parents neglect their children by locking them up in their mud huts and leaving their children to die of starvation. As there are no community care for the victims, most grandparents take over the caring responsibility but they too scum to the difficulty of providing 24 hours care with limited resources and food.
Research indicates that the only way to manage and treat these children is by meeting their basic needs (Lancet, 2016). Project implemented by an American organisation Hope for Human indicates that providing nutritious diet rich in vitamins B triggered significant weight gain and reduced seizures in the victims of NS. Furthermore, the victims who attended Hope for Human special school were able to learn and be included in the main education system. However, Hope for Human shut down the organisation due to lack of funding, and the children were released back to their villages into their poor living environment, and most succumbed to death. Those who survived, have no capacity to live independently and still require 24 hours support. Furthermore, the victims are not able to participate in economic development or achieve education qualifications. Besides, the local schools do not have the capacity, resources, and expertise to provide services appropriate for NS sufferers.
In summary, NS kills many of its victims prematurely. Death often appears to be a result of accidents such as drowning, falling into open fire, starvation, and seizures in the late stages of the disease, which can be avoided by provision of proper health care services.


A situation analysis by Ministry of Gender, Labour and Social Development, and UNICEF Uganda, 2015 reported that NU has the poorest health system in the world. Children are most deprived of access to health services such as immunisation against communicable diseases, drugs to treat common diseases, and hospital visitation for health check-up. Furthermore, children’s hygiene, sanitation, and access to clean drinking water is appallingly poor. To date, 22% of children in NU are orphans (Omwa & Titeca, 2011). The LRA’s actions have not only increased the rate of orphans in NU but have also hindered the ability of Ugandans to care for orphans. The staggering statistics presented here hardly gives light to the problem; numbers can never truly convey the picture of human suffering in NU. The words of an elderly woman living in NU portray the true state of the crisis; Her remarks: “the problems of orphans are incomprehensible; they have no clothes, no proper feeding, no access to healthcare services and at night they sleep like dogs in the third world countries”. She continues, “If you see the problems with your own eyes, you feel that it would have been better if the children had died with their parents”.

Additionally, droughts and erratic weather conditions for years have contributed immensely to famine, poverty and food insecurity leading to malnutrition among young people. These climatic events have had dire consequences on food security that eventually affects people’s ability to fight disease development, resistance, and treatment. Most people in NU, live below poverty line thus limiting the ability to strategically tackle emerging issues (The Uganda Poverty Assessment Report 2016).

School facilities and resources have been dilapidated during the four decades long conflict in NU. Children between the ages of 5-15 years old have sporadic or no access to education in NU. The existing local schools lack basic resources such as stationery, playgrounds and transport that enhance positive experiences in a learning environment. Furthermore, the ratio of teachers to students is 1:100, with most teachers lacking proper training.


Decades of conflicts and crises in Northern Uganda

Northern Uganda (NU) has experienced over four decades of perennial crises starting from the dictatorship of Idi Amin Dada to the notorious foray of the Lord Resistance Army (LRA) led by Kony. Although the peace prospect in NU has improved, the aftermath of four decades of conflicts have severely devastated the humanitarian and economic progress. Countless lives were lost, livelihood and social structure gone, infrastructure destroyed, poor healthcare system and facilities, sporadic education with no proper schooling infrastructures and resources.
It should be noted that while NU was going through the internal conflicts, other parts of Uganda, especially southern part, made progress on the main development indicators. Like many marginalised communities around the world, Acholi people do not fit the scope or criteria to attract support from international development and advocacy organisations, mainly because Uganda as a country is considered as a developing economy. However, this development is not reflected in NU. It is worrying to know that children between the ages of 5-15 in NU in 2021 lack access to basic education and health. And those who can attend local schools have no basic resources such as stationery, learning materials, chairs, tables, classrooms, and playgrounds. Most classes are conducted under trees, especially in the regional rural areas. The ratio of teachers to students in NU’s schools is 1:100. The poverty in NU is so severe that children are still going to school without food for several days. Children in NU are dying from treatable diseases like malaria, kwashiorkor, typhoid, diarrhoea, and tuberculosis. Nodding syndrome (NS) appeared in NU in 2001 after it was first discovered in Tanzania in 1960. The NS epidemic in this region has been reported to be directly associated with the 4 decades of conflict, food insecurity, and the outbreak of onchocerciasis. Due to the poor healthcare system in NU, it has been exceedingly difficult to combat NS and other treatable diseases mentioned above. Therefore, there is an urgent need to improve the current healthcare system to prevent further early childhood death.
Northern Uganda presents a raw opportunity for International Development Agencies to work collaboratively with the local communities to build community resilience and stimulate sustainable economic development. An ongoing pilot study indicates that establishing sustainable development programs among the local communities will improve the healthcare system and education for the children. However, it will require a long-term funding structure that involves collaboration with many actors, and active engagement and participation of the local communities. Acholi Resilience is on the forefront advocating and supporting the Victims of Nodding Syndrome using a successful ongoing pilot study in three subcounties in Kitgum district, which is heavily affected by Neglected Tropical Diseases, Nodding Syndrome, Malaria and HIV/AIDs and the current COVID19 pandemic. Acholi Resilience is a non-for-profit organisation registered with the Australian Charity Not-for profit Commission (ACNC). Acholi Resilience believes that Acholi people themselves are the agents of change and actors of their own development. The current pilot study includes a trial of a novel model of health care system that incorporates integrated case management and a Virtual Ward Concept. Improving the learning environment and quality of education as well as capacity building initiatives were also identified as a mean to empower the families affected by Nodding Syndrome.