Nodding Disease with hallmarks of Kony 2012

Published on
June 20, 2012

As the world was engrossed in watching the Kony 2012 viral video, released by the invisible children depicting the atrocities of Joseph Kony in Northern Uganda, An Invisible disease called the Nodding disease was taking its toll on the people of Northern Uganda. Not many in the international media mentioned the nodding disease, even when it depicted itself in many faces. The disease has many faces because the Acholi of Pader, Lamwo, Kitgum and Gulu where it has its victims, associate it with Joseph Kony. Many questions are still being asked, “Is the Nodding disease that is causing children to constantly nod their heads like lizards a psychological disease that comes after a devastating war?” Not even Africa’s greatest scientists have given an ounce of an answer yet. It is estimated that over 400 children have been affected by the nodding disease since its outbreak early this year. A former Ethics and Integrity minister Miria Matembe, broke down into tears after listening to stories of emotional distress and physical suffering that nodding disease victims go through.

In Uganda the disease has become a political hot potato of sorts. One member of opposition parliament, Beatrice Anywar wishing to draw attention to the disease and its effects on children, hired a bus and collected several of the children and transported them to the capital city, Kampala. She was criticised for making a political statement out of nodding children. But the president of Uganda Yoweri Museveni paid her and the children at the Mulago national referral hospital.

Other members of Parliament have asked Government to release the report on nodding disease so as to curb the epidemic.

"Government should seriously consider releasing its report on the findings by the Centre for Disease Controls (CDC) about the nodding syndrome," Dr. Medard Bitekyerezo , the chairman of social service Parliamentary Committee said.

Another member of parliament Alice Alaso from Serere said,

"People have been speculating a lot about the disease therefore, Government should ally peoples' fear and save the situation,"

A team of researchers from Atlanta Georgia (USA) who started researching on the cause of the nodding syndrome since last year had not made their findings public. Bitekyerezo a Ugandan legislator said parliament would liaise with Gulu research centre to tell the public about research findings on the exact cause of nodding disease.

It is presumed that, there is no cure for nodding disease, but the Uganda Ministry of Health is involved in efforts to find ways of containing, and possibly treating, the disease. An estimated two hundred children are among the several deaths recorded as a result of nodding disease over since 2009.

The head of the National Onchocerciasis Control Program, Tom Lakwo notes a close association between nodding disease and river blindness, hence a focus on fighting the flies that transmit river blindness.

"Although the cause of nodding disease has not yet been established, the mapping so far done shows that the most affected areas with river blindness are again those highly affected with the nodding disease," he explained.

In a meeting of technocrats that sat at Kitgum, Northern Uganda recently, it was decided that aerial spraying be used to yield better results. It set the months of June and July, 2012 to be used in mapping, and aerial spraying to take place in August and October this year, the latter period noted to be a peak season for the black flies that cause river blindness.

There is another angle to the disease that it is a result of poor nutrition. After the war, farm inputs became scarce and production of basic food nutrients collapsed.

Lillian Jane Adee the in charge of Palbek Kal Health Centre III notes that children are in dire need of food supplements.

"The affected families are each given four Kilograms of posho and beans to last two weeks and this is not adequate,"

Rose Ober a mother to four-year-old affected child says, "My child needs soya porridge but I cannot afford it”.

Local politicians are concerned about Government's food supply to the affected families saying it is inadequate. The legislators are concerned about the stunted patients saying that it could be due to lack of food.

"We found out that victims of nodding disease were stunted. A child of 15 years old looked like a child of 8- year- old. This is strange," Bitekyerezo remarked.

Meanwhile in Pader — Two lawsuits have been filed against the Ugandan government for alleged negligence in the handling of nodding disease which has killed at least 200 children and currently affects 3,500 (Uganda Ministry of Health). A local charity, Health Watch Uganda, has filed one lawsuit, and two members of parliament have filed another.

Health Watch Uganda has accused the government of violating the rights of affected children by not providing them with adequate health care.

"We want government to apologize to the families of the affected and those people who lost their children to nodding disease [and] we want government to compensate the lives of the children," said Ema Dini, executive director of Health Watch.

However, the government is also not sitting idle. It has rolled out a plan to fight the disease, opening three specialized clinics and training 99 health workers. But critics say it is overdue and inadequate. The Health Ministry says lack of funding has made it difficult to implement the plan. For the law suits, the Uganda Government Attorney-General Peter Nyombi said recently that his office would fight any nodding disease lawsuits to the end.

"[The complainants] are filing the suits in ignorance because I know what government has done, working together with the [United Nations] World Health Organization, researching the disease," said Nyombi. "A lot of money and food has been put aside for fighting the disease."