From the facts available about the nodding disease it is an unexplained neurologic condition characterized by episodes of repetitive dropping forward of the head, often accompanied by other seizure-like activity, such as convulsions or staring spells. The cause is UNKNOWN. The immediate cause for the nodding has been discovered to be a special seizure called an atonic seizure. An investigation conducted by MoH Uganda, CDC Atlanta and WCO Uganda in northern Uganda found a significant association between reports of munitions exposure, consumption of crushed roots and the presence of antibodies. There is also a possible link with the black fly-borne parasite that causes river blindness. Researchers have also observed a deficiency of vitamin B6 in the populations where the disease is prevalent. So in a nutshell there is no known cause and neither a cure.
What is most distressful about this situation which has forced Ugandan Women to Unite and “Speak Out” is the indignity that the nodding disease has caused to the children affected and their families. The mothers, who are the majority care providers, are forced to tie their affected children to trees as a way of providing protection so that the children do not harm themselves. This relieves the mothers to go out and attend to their multiple roles which include engaging in gainful economic activities. The Women of Uganda want to see the government doing more to assist and support the families with children affected by nodding disease and controlling its spread and effects on society as a whole. The most affected people reside in districts which were ravaged by the 20 years civil war in northern Uganda resulting from the atrocities of the Kony’s Lord’s Resistance rebel group and in some instances those caused by government troops in their efforts to defeat the rebels. The majority of people in northern Uganda are still living in abject poverty and are very slowly restoring their livelihoods. Therefore, the nodding disease and the many other health challenges in this context require extra efforts and commitment to relieve the suffering and deprivation of the people. Every life of a Ugandan must be equally valued and protected and as mothers of the nation we would like to see this happen in practice.
As the Women of Uganda take cognizance of the actions so far taken by government like undertaking research to establish the cause of the disease, providing palliative treatment and most recently approving a supplementary budget to support further emergency measures, they decry the very poor status of the health care system in the country which makes it more challenging to handle such complex cases like the nodding disease.
The Constitution of Uganda guarantees the right to life in Article 22. The State has an obligation to fulfil the fundamental rights of every Ugandan and ensure that all Ugandans have access to health services (Objective Principle XIV). Uganda is a signatory to many international and regional treaties and commitments that require the protection of the right of every person against fear and hunger, poor health and deprivation, and the right to maintain one’s dignity. The National Development Plan of Uganda (2010/11-2014/2015) identifies several factors that limit Uganda’s capacity to achieve her development targets. One of the factors is poor and inadequate healthcare. With a rapidly growing population (with the majority of the population being below the age of 25 years), the health care facilities are overburdened as they have not expanded and improved in tandem. Other vices like the high levels of corruption within the health sector have contributed to the growing challenges in the health sector that have resulted in limited access to quality health care by the majority of the people. In the context of northern Uganda where the whole health system practically collapsed in the last 20 years, increasing access to quality health care must be prioritized. This requires political commitment which goes beyond rhetoric and state house pledges, mobilization of internal and external resources, and addressing the bottlenecks that hinder efficient delivery of quality healthcare services.
The Kitgum Karavan
During the International Women’s Day week celebrations the women of Uganda visited the 25 patients affected by the nodding disease at Mulago hospital that had been transported to Kampala to seek for better healthcare. It was depressing to see the malnourished children who have practically become a burden to their mothers and families as the treatment of the unknown depletes the families’ resources. The Women of Uganda noted that it is time to honour and render direct support to our fellow citizens and mothers by visiting the three districts where the 3,000 patients of the nodding disease reside. The Uganda Women as part of the Speak Out Campaign are therefore organizing a 10 days Caravan (Kitgum Karavan) which will mainly cover three districts of Kitgum, Pader and Lamwo in Northern Uganda that are the most affected by the nodding disease. The Karavan on its way will make a stopover in Nakasongola and Gulu districts as part of the Campaign to appeal to Ugandans to support the people affected by the nodding disease and to also raise awareness about the effects of poor healthcare systems on the development of our country.