Nodding syndrome patients deteriorate due to undernourishment

Nodding syndrome patients deteriorate due to undernourishment

By Eden Mic


Malnutrition is unabated among thousands of children suffering from nodding syndrome in northern Uganda, but the situation is worse in households that have more than a child suffering from the mysterious condition.


Richard Okema, the focal person in charge of nodding syndrome in one of the villages in Kitgum, a district where nodding syndrome was first recorded, said families that have more than one person with the condition are the most hit by food shortages. In such homes, parents cannot engage in productive work as they have to keep constant watch of their children, so that they do not wander off due to their cognitive challenges.


In 2017, the government of Uganda gave food provisions to the affected households. Okema however said the quantity of the last ration distributed in August, was ‘insulting’.


“We were given 3 kilograms of rice, a kilogram of beans and one and half kilos of fortified food per patient,” Okema said.


Filder Anyeko is a 47 year old mother who has three children battling nodding syndrome. She said she and her husband had decided to farm in shifts, so that the sick children are not left unattended. But this affects their output because; “My husband does not work hard because he is always drunk, so his contribution in farming is limited,” She said.

Malnutrition among patients of nodding syndrome, is compounded by poverty in the region, which is worrying, according to a 2016 World Bank study.


In 2012, Hope for Humans care center for children suffering was nodding syndrome was opened in Omoro district, to provide nutritional and other care for children of nodding syndrome, but the center was recently closed.


Consequently, parents like Aldo Olobo, a father in Omoro district, whose three children have nodding syndrome are stranded.


Aldo’s right leg ‘suddenly’ got paralyzed in 2013; he walks with crutches. His condition has weakened him and he is unable to engage in productive farm work, leaving his wife overwhelmed with work.


Aldo’s eldest child, Mao Oyat, 18, started showing signs of nodding syndrome in 2009. In 2013, he was among the children who were taken by Hope for Humans for holistic care. His parents were a bit relieved; but now, life is more complicated.


“Food is inadequate because I can’t engage in farm work,” Aldo said. “My wife works alone to get food and every other basic item…she is overloaded,” he stated.


Dr. Geoffrey Akena, the Kitgum district focal person for nodding syndrome said starvation is a major challenge among children suffering from nodding syndrome.


“When the children don’t eat enough, they get malnourished…they move around in search of food. Many of them have drowned or gotten burned,” he said.

Akena stated that children with nodding syndrome improve within two years, if all opportunistic infections are treated promptly, and with proper care and nutrition.  However, he estimates that only 30 percent of the patients are getting better because many are not well fed and are neglected by immediate family members and the community. There have also been reports of medical workers neglecting the patients because no facilitation.

Inadequate food in families with nodding syndrome is compounded by episodes of seizures which is reportedly triggered by eating. This means even when there is food, intake is interrupted by the attacks, thus, malnourishment.


Members of Parliament, MPs, last week toured the affected districts in a rather delayed attempt carry out a ‘situation analysis’ to upend the pandemic, by pushing the Ugandan government to set aside a separate budget for managing the syndrome.

In a campaign dubbed; “We Are Also human”, the MPs clearly intend to throw it in the government’s face that it has neglected victims of nodding syndrome.

They are appealing to well-wishers, Non-Governmental Organizations, NGOs and other partners to raise money for buying food, medicine and improving the livelihood of households affected.

If their efforts yield, it could have significant upshots for a sub-region that has been blighted by the mysterious disease for more than a decade.


“If we want to see real progress in the patients, we need enough food for the entire family members of nodding syndrome,” said Okot Peter, the legislator for Tochi County in Omoro district.

“You can’t donate food and you expect only one or two people in the family to eat, while others who are grounded taking care of them go hungry,” Hon. Okot added.  


Locals in the most affected districts of Pader and Kitgum say the children afflicted by the strange disorder are straying from their home in search of food. In kitgum district, a local councilor said 15 patients have drowned, four are in hospital due to serious burns. May have become pregnant or gotten infected with Sexually Transmitted Infections (STIs), due to rape.


Local leaders in the three most affected districts estimate the current number of patients of the syndrome at 1.600. In 2014, more than 3.500 were estimated to be afflicted by nodding syndrome in northern Uganda. The estimated death rate is 6.7%, however, according to a science publication, there is no exact figure.