The Uganda Red Cross Society has threatened to suspend its operations in the districts affected by nodding disease, where it has been battling the syndrome since last year.
Morris Ayikanying, a senior program manager for community-based health at Red Cross, told a select committee of parliament that they have a difficult time persuading partners to support the victims and their families. The syndrome has ravaged Kitgum, Pader, Lamwo and Gulu districts.
Ministry of Health statistics show that about 200 children have died from the syndrome while another 3,000 are affected.
The unclear nature of the cause and cure of the nodding syndrome has hampered the planned activities for the humanitarian organisation. Ayikanying says Red Cross is depending on the emergency funds to operate in the affected districts and if not supported, may withdraw its services from the area.
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A recent survey by the office of the Prime Minister and the Ministry of Health shows that there are 1,619 households registered as having children with nodding syndrome in the three districts of Kitgum, Pader and Lamwo. From these households, a total of 2,177 children suffer from the syndrome with the largest group being 10-18 year olds.
Ayikanying wants government to make an international appeal in order to determine the root cause of the syndrome. He suggests that universities including the local ones should be given an opportunity to research on the nodding syndrome.
He says the government response has mainly been focused on establishing health centers while ignoring the community perception and behavior change strategies. This has led to stigmatisation with some parents abandoning children while others tie them on trees.
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Already, government has engaged the Centre for Disease Control (CDC) based in Atlanta, USA to research and find out what the problem is. According to Medard Bitekyerezo, the Mbarara Municipality MP, the preliminary report is already with government but details have not been made public.
The disease was first reported in Uganda in 2009 and later new cases were reported in December 2011. A similar illness was first reported in Tanzania in the 1960s, Liberia in 1983 and South Sudan in 2003.