Via marklawi, the blog of a young Australian working in Africa: Nodding Disease in Tumango Village. Excerpt:
Village members recall the first case of Nodding Disease in Tumango as dating back as far as 1998, and Kitgum district has being the worst hit region for the syndrome ever since. ‘It started slow, but it is now increasing.’
104 children in the village are currently known to have nodding disease. Parents told us this was more than half of the children in the entire village. 10 had already died from associated symptoms or trauma in Tumango. It's hard to fathom the fear and helplessness this village must have in the face of this growing health concern.
The village kept a register of cases, and it was apparent that the government and a range of medical and other international organisations (including the Atlanta-based Centre for Disease Control) had visited the area offering diagnostic support, epilepsy medication, and taking skin folds. 25 children had been taken all the way to Mulago Hospital in Kampala for MRI scans. The scans showed clear brain ‘shrinking’. Parents want to know why. So do doctors.
When I asked whether the epilepsy medication has been having a positive effect in reducing cases of nodding as is widely reported, many parents felt that it had had the opposite effect. Some families had stopped using the medication for this reason. Multi-drug therapy was also being used for some cases (a mixture of encephalitis, river blindness, the B6 vitamins and epilepsy medication) but was also felt by the community not to be effective.
The community was at a loss to explain what they thought was the cause of Nodding Disease. They felt that it had something to do with either ‘chemicals left after the civil war, food given out at IDP camps during the LRA-era, or water from the river’. Indeed, the community noted that most of the children affected lived near rivers or water sources. They felt not only did this have something to do with the cause for the disease, but the proximity of children to water was dangerous due to their tendency to wander off and potentially fall in or potentially drown after a nodding incident.
Parents at Tumango said they would ‘tie the child to a post’ when they went out to farm in the fields. They felt this was the only option for them as there was noone to look after their children who increasingly need constant care and observation. Others simply locked their child in the house. Most were no longer in school. One child in Tumango, Joyce, had fallen into the fire and lost use of her hand during a nodding episode. Having a child with Nodding Disease was clearly having an impact on the livelihoods of parents and the dignity of children.
