Nancy Lamwaka is a beautiful 12-year-old girl in Lapur village in the northern Ugandan district of Pader. The district which was the epicenter of a 20-year-old rebellion that left tens of thousands of people dead and over two million others homeless is slowly recovering from the ruins of war.
Like any other parent, Lamwaka’s parents had a lot of hope in her, until their dream was shattered by a mysterious disease that crippled her. She was reduced to almost a lesser human being because every morning as her parents left to tend to their gardens they tied her on a mango tree allegedly for her safety.
Leaving her untied has had some dare consequences on her as she burnt her fingers. At times she is left under the care of her elderly grandmother Josephine Ataro. “I don’t know how to take good care of her. The situation ties me down here at home and I can no longer go the garden and farm because I have to keep watch over her all the time. Tying her on the rope just makes very sad,” she said.
Lamwaka is not alone; thousands of children in northern Uganda are victims of the mysterious disease whose cause is not yet known by scientists despite years of research. “The cause still remains elusive, a lot of investigations are still going on and as I told you we have a high level team of researches and consultants. We have got more specimens, we have interfaced with the local people to get some leading clues,” said Bernard Opar, National Coordinator for Nodding Syndrome.
Ministry of health statistics indicate that over 3,000 children have been affected by the disease and some 170 other children have died since the first case was reported in 2009. These are only statistics recorded as a result of clinical visits but thousands of children are affected in villages which are being re-established after a brutal rebellion that forced over two million people to stay in squalid internally displaced person’ s camps. While Lamwaka is chanced to be tied out, some parents lock up the infected children in mud and wattle huts and can only see their siblings play through holes in the huts.
As Xinhua visited David Okot still in Pader district, he violently pushed the door to the hut he was tied in order to join his sibling who were playing outside. Powerless, he could not succeed in opening it and he resorted to peeping through the door. Parents insist they have to tie the children or else they will wonder off and end up drowning in rivers or falling in fire places like some have done. Mystery still surrounds the cause of the disease with various theories and superstitions doing the rounds.
Some of the locals here allege that most likely the disease is caused by smoke from guns since the region, until 2006, faced a brutal rebellion. Others allege that it is due to the spirits that have not yet been appeased. This theory is mainly derived from the shaking the children get when they have an attack. Scientists dismiss all these say the cause is not yet known.
“These can be demystified in that most of them were actually born after the war but they have developed the disease. Equally areas where this disease has been reported they have not had war for instance Tanzania,” said Emmanuel Tenywa, a World Health Organization (WHO) official in the region. Scientists instead argue that there are studies going on to among others find the relation between River blindness, epilepsy and the nodding syndrome.
They say the reason for this is that all the affected children are in the River blindness belt. Luckily enough the disease is not contagious or infectious. As a result of the gravity of the disease, the ministry of health with help from international agencies like the American Center for Disease Control and the WHO are rolling out a 3.8 billion shillings (1.5 million U.S. dollars) emergency plan. In the plan referral centers have been established in the affected communities up to the national referral hospital, Mulago Hospital.
A team of high level experts including those from the WHO are training health personnel who will be deployed in the affected communities. “We know the clinical manifestation, we know the symptoms. So we need to intervene by alleviating the pain that is being caused by these symptoms as we continue to look for the particular cause. I know it will take us a while but eventually we shall be there, in health you cannot hurry things,” said Tenywa.
With these assurances and with promises of finding a cause and cure, it is hoped that Lamwaka, Okot and the thousands of affected children in northern Uganda will regain their lives back. Already some children have responded to the symptomatic treatment of the disease. The government has also started distributing fortified food to the victims of the disease and maize and beans to the affected families. (Xinhua)
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