Nodding syndrome stigmatisation causes concern in Acholi
Residents often accuse families with affected children of uncontrolled defecation and unsanitary practices, which perpetuates their isolation.
MP Gilbert Olanya with a mother whose son is suffering from nooding syndrome. (Photos by Christopher Nyeko)
By Christopher Nyeko
Journalists @New Vision
________________
In Pader district's Angagura sub-county a cohort of determined parents is vocalising their frustration over the increasing stigmatisation associated with caring for children diagnosed with nodding syndrome.
Nodding syndrome is a severe neurological disorder characterised by recurrent head nodding, debilitating seizures, and significant cognitive decline.
Labworomor village-based Margarete Akumu, a mother, says her 21-year-old son faces an uphill task as a result of this condition.
She says her household is subjected to community ostracism and unfounded beliefs regarding hygiene.
Residents often accuse families with affected children of uncontrolled defecation and unsanitary practices, which perpetuates their isolation.
“Those misconceptions deeply affect our social interactions, limiting our ability to communicate with neighbouring communities that are in denial of our children’s condition,” she says.
The stigma is compounded by behavioural manifestations of the disorder; some children exhibit aggressiveness, which further alienates them from their peers.
“This stigmatisation has severed our connections with other communities, as they view our children through a lens of apprehension,” Akumu says.
Moreover, the situation is exacerbated by the vulnerability of girls and women afflicted by nodding syndrome, exposing them to increased risks of sexual exploitation.
Sexual violence and the threat of infections
Between 2020 and 2024, community reports indicate that approximately 30 girls with nodding syndrome in Angagura have faced sexual violence and resulting pregnancies.
Nighty Akumu, the mother of 27-years-old man suffering from nodding syndrome.
Parents speculate that prescribed anti-epileptic medications, such as phenobarbitone and sodium valproate, may inadvertently increase sexual impulses in these young women, rendering them more susceptible to predatory behaviour during busy market days and communal events.
In response to these threats, some mothers have sought to protect their daughters by administering contraceptives to prevent unwanted pregnancies.
However, this precaution does little to mitigate the risk of sexually transmitted infections, leaving families in a precarious and vulnerable situation.
Angagura LC3 chairperson Stephen Freddy Okello said there is reluctance among local residents to engage with families of affected children.
Some community members refer to affected children as “moving coffins,” “dogs,” or “ghosts,” and categorise them as part of a “useless and lost generation.”
Approximately 480 children are currently battling nodding syndrome within Angura sub-county, particularly in parishes such as Burlobo, Kalawinya, Pucota, and Pungole.
Tragically, the consequences of this stigmatisation have been dire, with reports indicating that at least five affected children have died since 2024 due to preventable accidents like drowning, vehicular collisions, or fire-related incidents.
The World Health Organisation (WHO) says it first brought the disease to the attention of the world when it was investigating cases in south Sudan in 2001–2002. Earlier studies and descriptions of the disease from the 1960s onwards had been limited and treated with sceptism among neuroscientists.
Scientists from WHO and the Centers for Disease Control and Prevention (CDC), Atlanta, are now studying possible links between nodding syndrome and onchocerciasis, also known as river blindness.
"About 93% of all nodding syndrome cases are reported from onchocerciasis-endemic areas, creating a strong hypothesis for common risk factors between the two diseases. Cases have so far been reported in Uganda, South Sudan and Tanzania".
Food supplements
In an effort to provide support, the NEUXTEND Foundation has initiated a pilot project aimed at supplying food supplements to affected children, investigating potential links between nutritional deficiencies and the persistence of seizures and head nodding.
Currently, 22 households in Angagura sub-county receive a bi-monthly distribution of varied food items.
Margarete Akumu, a participant in this initiative, reports some positive outcomes: “The food supplies have helped my child gain weight,” although she acknowledges that cognitive impairments persist.
Iskedio Okello, manager of the NEUXTEND Foundation, is working towards establishing a telemedicine center dedicated to children with nodding syndrome at Gulu Regional Referral Hospital, aiming to enhance access to specialised medical care and resources.
Call for special programme
In parallel, Gilbert Olanya, the Member of Parliament for Kilak South County, has urged the health ministry and the Government to devise a specialised programme addressing the unique challenges faced by families impacted by nodding syndrome.
According to reports from the health ministry, approximately 6,000 children in the Acholi region are affected by this debilitating condition, with a tragic count of at least 300 confirmed fatalities.
Community narratives trace the etiology of nodding syndrome to the adverse conditions endured during the years of confinement in internally displaced persons (IDP) camps, positing that the condition has worsened in the aftermath of familial reintegration into their original communities.
Recent findings from Gulu University indicate that there have been no new reported cases of nodding syndrome; however, a noteworthy concern arises from the fact that individuals already affected continue to have children.
This presents a glimmer of hope, as some young individuals, despite their challenges, have established families and given birth to healthy offspring.
Crippling condition
Nonetheless, the debilitating effects of nodding syndrome significantly hinder the ability of these parents to fulfill caregiving responsibilities.
Many are unable to participate in agricultural activities, which constitute their primary means of livelihood.
As the children with nodding mature, safeguarding them has become increasingly problematic.
Some of these children have displayed erratic behaviour, resulting in perilous incidents such as setting their homes on fire and disappearing, thereby heightening disturbances within their communities.
In response to safety concerns, numerous families have resorted to confining their children within the home when attending to agricultural duties.
This approach, however, has raised significant ethical concerns and has been criticised as inhumane by various observers.
For families confronting the severe repercussions of nodding syndrome, the need for comprehensive understanding and support remains critically urgent.