A UGANDAN OPPOSITION LAWMAKER ACCUSES THE GOVERNMENT FOR NEGLECTING FAMILIES COPING WITH THE NODDING DISEASE


By Paul Ndiho

April 10, 2012

A Ugandan Opposition politician is accusing the government for not declaring parts of Northern Uganda affected by the Nodding Disease as disaster areas. Several thousand Children in the North Uganda are afflicted by nodding syndrome, which affects the neurological system and has no known cure.
The World Health Organization says the mysterious Nodding disease in Uganda is afflicting over 4,000 children and has caused the death of more than 200 Children since it was first reported by the country’s ministry health in 2009. Victims tend to have seizure-like episodes and constant head nodding. Nancy Lamwaka is twelve years old, and suffers from a mysterious disease known as nodding syndrome.
Her father ties her to a tree outside their grass hut in Northern Uganda for her own protection.
The disease gives Nancy seizures and has diminished her mental capacity – She has lost the ability to talk and often wanders away. Nancy once went missing in the bush for three days.
“It hurts me so much. In our tradition it is a taboo, it is not something heard of that you would tie someone to a tree but because I want to save her life, I don’t want her to go to the bush and get burnt, I don’t want her to go and drown in the river nearby and I don’t want her to fall in fire. As you have seen, the wounds on her fingers are from falling in fire.”
Beatrice Atim, an opposition Member of Parliament (FDC – Party), from Kitgum, District in Northern Uganda accuses the government neglecting families coping with the disease and calls on the government to declare the affected area a disaster zone.

“If there’s a problem, a sickness of that magnitude, the government should be free to let it be examined and tested for a result. But you find children who are being brought from the villages to a National referral Hospital, being arrested, and the issue was that they are going to shame the government. We have asked the President to declare a disaster area. The government has refused. The suspicion you have among the communities is that during the war, probably the missiles which were used, and the war machinery which were used, could have been poisonous. Or even the same food items which were distributed could have had some chemicals or poison in it. And of course empirical evidence, the burden is upon the government to come out and prove that what the people are suspecting is not true.”
The Ugandan Government has dispatched a team of experts from nation’s ministry of health to the region, along with officials from World Health Organization W.H.O and the U.S Centers for Disease Control (C.D.C) to focus on finding a treatment for the disease. The group plans to conduct trials on several different types of seizure medication as well as supplements of vitamin B6.
A doctor at the regional World Health Organisation (W.H.O) says children are finding it difficult to eat because of the seizures, which are often triggered by food. Many children who have nodding syndrome become affected in many different ways.
“The issue is that there is a general effect in their neurological system to the extent that some can be impaired in vision, in eating even mere recognition of their immediate environment, so that is why we are calling it a syndrome, because not all are really manifesting in the same way, some may have just a few of these features.”
Researchers and experts from C-D-C have been examining and searching for the origins of the disease. They say there is a possible link between the Black-Fly borne parasite that causes River Blindness, and Nodding syndrome.
“We have done extensive laboratory investigations trying to find the cause for nodding syndrome, in fact we have ruled out three dozen different possible causes for nodding syndrome, including some of the most recent results looking for 18 different viral families encompassing literally hundreds of individual viruses all negative for nodding syndrome.”
While the effects of the disease – first documented in Tanzania in the 60’s – are well known, researchers are still confounded by nodding syndrome, and the search both for its origins and a cure continues.

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