Pader, Uganda
In Angagura sub-county, Pader district, the persistent and devastating impact of nodding syndrome continues to haunt over 300 families. The health challenge has persisted for several years despite government interventions to alleviate their suffering.
The dire need for medical supplies and the emotional toll on affected families have left many in tears and despair, prompting urgent calls for a more effective and immediate government response.
Several families are currently torn apart by the disease and the burden of caring for nodding syndrome patients has become overwhelming. Irene Oroma and her two siblings have been battling the syndrome for some time.
Their aging mother expressed a heartbreaking thought and desire for her children to pass away, to free her from the financial stress and emotional pain. She has resorted to selling everything in her home to meet the demands of providing medical supplies and constant care for her afflicted children.
The nodding syndrome patients in the region not only face significant health challenges but are also vulnerable to exploitation.
The syndrome, characterized by abnormal increases in appetite for both food and sex, renders patients vulnerable, causing them to faint near fire or running water. Many patients are tied or locked up due to these challenges, leading to cases of rape and defilement, particularly among female patients.
For instance, Oroma has become a young mother of three due to the exploitation by men in her village, highlighting the syndrome’s impact on the social fabric of the community.
The Kilak South MP – Gilbert Olanya appealed for urgent government intervention by taking patients to Mulago National Hospital for specialised treatment and medical studies.
“We cannot let these families suffer alone; immediate government intervention is crucial to address the escalating crisis,” stressed Olanya.
As of 2018, the burden of nodding syndrome in Northern Uganda stood at 2143 patients, with over 500 recorded deaths since 2007. Despite government efforts, the situation demands urgent attention to prevent further suffering and loss within the affected communities.
The persisting challenges indicate that current interventions have fallen short, underscoring the need for a comprehensive and sustained strategy to combat nodding syndrome and its devastating consequences.
Last year, health experts from Mulago National Referral Hospital and the University of Toronto – Canada expressed the critical need for in-depth research on the nodding disease syndrome. This syndrome continues to cause pain and fatalities among children in the Acholi sub-region of Uganda.
While appearing before the Parliamentary Committee on Health, Dr. Sylvester Onzivua, a consultant pathologist at Mulago Hospital, and Prof. Michael Pollanen, a pathologist at the University of Toronto, shared preliminary findings from Prof. Pollanen’s study on nodding syndrome in Kitgum district.
Expressing concern over the lack of a known cause and treatment for the disease, which emerged in the 1990s and has affected over 5,000 children, Prof. Pollanen highlighted the need for extensive research to understand the connection between the disease and the Lord’s Resistance Army insurgency.
“The early epidemiological studies showed clearly that there is a relationship between the disease and the Lord’s Resistance Army insurgency, but we do not know what aspects of the war are responsible?” said Prof. Pollanen. “We are asking: Were there any environmental challenges; were there any effects on the water due to the war that affected people?”
Dr. Onzivua further stressed the importance of clinical and epidemiological studies to find a lasting solution. He proposed creating a detailed profile of the 5,000 cases and conducting clinical studies to monitor the progression of the disease among those affected.
One of the concerns raised by Chua West MP, Okin PP Ojara, was the mystery behind why the disease affects only children and why it is concentrated in Acholi. He suggested investigating whether the problem arose from relief food distribution during the insurgency, NGO activities, or failed vaccine trials.
Ojara appealed for an urgent humanitarian response from the government, citing improvements observed when children with the syndrome are provided with proper nutrition.
WHO, CDC Intervention
The nodding syndrome is a devastating illness primarily affecting children aged 5 to 15. Despite concerted efforts, the cause of this affliction remains elusive, and a cure is yet to be discovered.
The condition, previously known as ‘nodding disease’ or ‘head nodding disease,’ gained international attention during the first-ever global scientific meeting on the subject held in Kampala, Uganda, in August 2012.
Nodding syndrome manifests through head nodding episodes, often triggered by factors such as food consumption or exposure to cold weather. Accompanied by convulsions or staring spells, these episodes render affected children unresponsive, with or without a loss of consciousness. Some victims experience a deterioration in brain function, while the majority suffer from malnutrition and growth retardation.
The World Health Organization (WHO) and the Centers for Disease Control and Prevention (CDC) in Atlanta are intensively researching potential links between nodding syndrome and onchocerciasis, commonly known as river blindness.
A staggering 93% of reported nodding syndrome cases emerged from onchocerciasis-endemic areas, suggesting a plausible connection and shared risk factors between the two diseases. Nodding syndrome has been documented in Uganda, South Sudan, and Tanzania.
While anti-epileptic drugs offer limited relief from seizures in some children, their overall effectiveness is under scrutiny. In light of these challenges, WHO is advocating for widespread treatment of onchocerciasis using ivermectin across affected districts.
Additionally, the organisation recommends reinforcing health systems as the most effective approach to address not only nodding syndrome but also other neglected tropical diseases. The urgent need for comprehensive strategies and global collaboration underscores the severity of this enigmatic health crisis.
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