Acholi leaders task gov’t on cause of mysterious nodding syndrome

Local leaders in Acholi say government has not given the disease keen interest to find the real cause for an appropriate cure to be discovered

Kitgum, Uganda | THE INDEPENDENT | Leaders in Acholi region have tasked the government to come out and reveal the cause of mysterious nodding syndrome, 14 years since the neurological disorder was discovered in the country.

The unexplained ailment has claimed more than 300 children, and bedeviled over 3,000 others mostly in Omoro, Pader and Kitgum districts. Currently, more than 175 children are receiving care for the nodding syndrome in Omoro, another 100 in Kitgum, and more than 50 in Pader district. But the exact cause of the condition remains unknown.

The bizarre ailment which the World Health Organization-WHO says has no set of causes was first documented in Tanzania in the 1960’s, then later in South Sudan in the 1990’s and in northern Uganda in 2007. The world body says the disease has been causing progressive cognitive dysfunction, nervous deterioration, stunted growth and a characteristic nodding of the head.

However, despite numerous and extensive investigations in all three countries, very little is known about the cause. Some researchers have attributed it to the parasitic nematode, which also causes river blindness and to the blackfly. But Michael Rachkara, the chairperson of Akoyo village in Odek sub county says he is disappointed that the real cause of the syndrome is still unknown.

Castro Odur, a parent who lost three of his five children to the disease says that the condition has left him with curiosity. Several other parents and local leaders in the region observe that the government has not given the disease keen interest and the political will to find the real cause so that an appropriate cure for it is discovered.

Douglas Peter Okello Okao, the Omoro LC V chairperson says that the government has in the past commissioned several studies and scientific investigations to ascertain the cause of the disease but reports of their findings have not been known.

The acting Omoro District Health Officer Robert Ongom explains that the conditions of the children affected by the syndrome are still alarming. Amid resource constraints, Ongom says the disease still has not cure and they are treating the patients only with anti-seizure tabs.

A care and treatment centre built for the victims by Hope for Humans, a charity organization in Odek and Tumangur in 2012, closed down in 2017 due to funding shortfalls, consequently forcing over 300 affected children home where the patients continue nodding into their graves.

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