Writen by sadataley 9:47 AM - 0 Comments

 Easing the Pain of Shattered Dreams

Prolonged absence from school is common for children affected by the nodding syndrome. Christine Akello (left) with her children, 14-year-old Moses (middle) and Tedy, 12, in Paikat Akidi village, Pader district, northern Uganda; the siblings are currently in lower primary school. © LWF Uganda/Alison Thurston

LWF Uganda Supports Families Affected by “Nodding Syndrome”

KITGUM, Uganda/GENEVA, 19 April 2013 (LWI) – He prepares himself every morning, walks up to the path leading to the compound’s gate and stands there, watching other children from the village pass by on their way to school. On some days, 13-year old Bernard remains in that position for hours, yearning to take the path to school.

Bernard’s younger brothers go to school. But his elder sister Janet dropped out to take care of her siblings after their father died, and the mother abandoned the home following cruel treatment from her in-laws. At 18, Janet grows some food crops, works on other people’s farms for money and makes clay pots for sale to support her brothers.

Visiting another village in mid-March, staff from The Lutheran World Federation (LWF) Uganda program found 10-year-old Paul sitting in a tree shade, his little sister Sara asleep nearby on the bare ground. The orphaned siblings live with their elderly grandmother, who must find food for the family and occasionally visit relatives in the neighborhood looking for assistance. Her absence poses a great risk for Paul who cannot be left alone. Keeping six-year-old Sara out of school ensures that someone looks out for her elder brother.

Paul is physically handicapped, falls ill quite often, and does not go to school. Bernard, on the other hand, while appearing to be undernourished, has no physical deformities and communicates well. Bernard insists he cannot go to school for fear of getting seizures which would make other children laugh at him and start discriminating against him.

The two boys suffer from the Nodding Syndrome (NS), an ailment which is characterized by seizures, including repeated nodding, hence the name. It is mainly found in northern Uganda, and affects children aged between five and 15 years. According to Uganda’s Ministry of Health, the syndrome was first reported to authorities in 2009 but it had been endemic since 2005 in Kitgum, Pader and Lamwo districts. By 2012, around 3,000 cases had been reported including hundreds of deaths, but to date no cause has been discovered for the condition.

Because of the frequent seizures, some patients become completely paralyzed, deformed and unable to talk, while others remain in their normal body stature with the ability to talk. The condition can lead to mental impairment, with patients becoming so weak that they are unable to eat.

Stigma is rife toward NS patients and their families. Staff from the LWF Department for World Service (DWS) Uganda program use door-to-door visits to reach out to the most vulnerable households in Kitgum and Pader districts.

Minimizing Risks at Home, Improving Food Security

With no proper diagnosis so far, the Ugandan health ministry responds by treating the NS symptoms with anti-epileptic drugs, and working with its partners such as the LWF to provide psychosocial and livelihood support to the affected families.

As part of its humanitarian response and development work in the East African country, LWF Uganda assists households to cope with the adverse effects of the nodding syndrome, says Mr Jesse Kamstra, LWF representative and head of program work there.

The cases that LWF staff encountered during the March and previous visits, show that many families do not know how to handle patients during seizures and accidents are frequent, with children injuring themselves at open fires and others falling into water, and in some cases drowning.

LWF’s intervention includes providing households with skills training in constructing the “rocket lorena” improved cooking stove, which consists of a protected firewood chamber, one or two pot cavities (cooking plates) and a chimney. The stove greatly reduces the risk of exposure to an open fire place, minimizes smoke inhalation, and promotes efficient use of scarce fuel wood, Kamstra notes.

The inability associated with NS makes its patients vulnerable to other forms of discrimination and exploitation, including neglect at home and sexual abuse. In some households, patients are tethered to pillars to keep them in the house; others are denied food and proper shelter; and girls have been sexually assaulted leading to unwanted pregnancies and the risk of sexually transmitted infections. In addition, many children like John, Bernard and their care providers are denied the right to education.

LWF assists families with improved nutrition for the sick children and other vulnerable household members, and offers guidance on how to improve food security at family and community level. Information sharing about NS has helped to increase awareness about the condition and improved care and support for the affected children, Kamstra notes.

Recovering from Impact of Civil War

The majority of children affected by the nodding syndrome were born and grew up in camps for internally displaced persons during the 1986-2006 civil war between rebels of the Lord’s Resistance Army (LRA) and the Ugandan government, in which tens of thousands of civilians died. For many residents of Acholi province who returned home after the 2006 and 2008 peace talks, “it is as if a second war has hit our land. Most of the children we bore from the camps, those who escaped being abducted by [LRA leader Joseph Kony] have been swept away from our hands by this mysterious illness,” laments a mother who lost a child to the ailment.

With no specific treatment for NS, “it is important to understand the difficult conditions endured by the affected children and their families, many of who have barely recovered from the impact of two decades of civil war,” says the LWF representative.

“Interventions such as the inexpensive ‘lorena’ cooking stoves, increasing access to safe drinking water and improved nutrition go a long way in providing some relief to the families, many of who are struggling to make a living,” Kamstra added.

Assistance provided by LWF Uganda to NS-affected families in Kitgum and Pader districts in 2012 reached 2,005 children (1,132 male and 873 female) from 1,484 households. The LWF plans to increase support to more families.

The LWF has been implementing relief and development programs in Uganda since 1979. The program has expanded and adapted to meet the changing needs of communities across the East African country

• Facebook
• Tweeter
• Google+
• Pinterest