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Syndrome shatters dreams

In Uganda, help for familiesaffected by nodding disease

Every morning Bernard, 13, walks up the path to the compound's gate and stands there. He watches other children from his village in Uganda pass by on their way to school. Some days he remains in this position for hours. He really wants to take that path to school.

Bernard's younger brothers go to school. But his sister dropped out to take care of her siblings after their father died and their mother abandoned the home because her in-laws treated her cruelly. So Janet, 18, grows some food, works on other people's farms, and makes and sells clay pots to support the family.

Bernard says he can't go to school for fear of having seizures that would make other children laugh and discriminate against him.

In another Ugandan village, Paul, 10, sits in the shade of a tree with his sister Sara, 6, asleep nearby on the ground. Paul is physically disabled, often ill and doesn't go to school. The two orphans live with their elderly grandmother, who must find food for the family and occasionally visits neighboring relatives to ask for assistance. Her absence poses a great risk for Paul, who can't be left alone. Keeping Sara out of school ensures that someone is there to look after him.

Both Paul and Bernard suffer from nodding syndrome, an ailment characterized by repeated nodding, a trancelike state and frequent seizures. Mainly found in northern Uganda, it affects children ages 5 to 15.

According to Uganda's Ministry of Health, the syndrome was first reported to authorities in 2009, although it had been endemic since 2005 in the Kitgum, Pader and Lamwo districts. By 2012 some 3,000 cases were reported, including hundreds of deaths. The cause for the condition hasn't been discovered.

Patients can experience paralysis, stunted growth, physical or intellectual disabilities, and loss of speech. Some become too weak to eat. For patients and their families, nodding syndrome also carries a stigma. So Lutheran World Federation workers in Uganda use door-to-door visits to reach out to the most vulnerable households in Kitgum and Pader districts.

Minimizing risks at home
With no proper diagnosis for the syndrome, the Ugandan health ministry treats the symptoms with antiepileptic drugs and works with partners such as the LWF to provide psychosocial and livelihood support for families.

Since 1979 the LWF has engaged in relief and development work in Uganda. Now, LWF-Uganda also helps households cope with the adverse effects of nodding syndrome, said Jesse Kamstra, the federation's representative in Uganda.

To help, ELCA World Hunger provided $196,300 in 2012 to LWF-Uganda, including $91,000 for nodding disease work in the Kitgum and Pader districts. In 2013, World Hunger is providing $298,620 for work in Uganda.

LWF staff help families learn how to avoid accidents during seizures, where children have been injured by falling into open fires or water — in some cases drowning. For example, LWF workers show family members such safety measures as how to build a "rocket lorena," a stove with a protected firewood chamber, cooking cavities or plates, and a chimney. Kamstra said the stove reduces the risks of cooking over an open fire, minimizes smoke inhalation and promotes efficient use of wood, a scarce fuel.


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