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Families plead with gov’t to reopen nodding syndrome treatment centers

Child suffering from the nodding syndrome disease. It is a neurologic condition characterized by episodes of repetitive dropping forward of the head, often accompanied by other seizure-like activity such as convulsions or staring spells.

Omoro, Uganda | THE INDEPENDENT | The families of nodding syndrome victims in Acholi are pleading with the government to expeditiously reopen the treatment centers in the region.

This follows the deteriorating health condition and death of some of the affected children in Odek sub county in Omoro district and Tumangur in Akwang sub county, Kitgum district following the shutdown of two clinics. Hope for Humans, an NGO opened the two treatment centers to provide specialized treatments to the victims of the nodding syndrome in 2018.

Since then, a total of 18 nodding patients, 11 in Akwang and 7 in Odek sub-counties respectively have died due to malnutrition-related complications and drowning between 2020 and April this year according to records obtained by Uganda Radio Network.

Michael Odur, a resident of Labworomor village in Akwang says that caring for the children affected by the nodding condition since the closure of the treatment centers has become an uphill task for him and the entire family due to resource constraints. Odur, a peasant farmer had two sons who were both affected by the syndrome in 2003.

He revealed that one of his sons, Mark Okect passed on in 2020 aged 23, three years after being moved home following the closure of Odek treatment center. He says his surviving 23-year-old son, Vincent Ocan is severely deformed, unable to talk, walk, and suffers numerous health complications due to poor feeding and medical care.

Castro Odur, another resident of the same village whose five children were diagnosed with the bizarre disease reveals that the health status of his children has been so alarming. He consequently lost three of his daughters in 2019 after they were returned from Omoro district.

He is bitter that the treatment center in Tumangur, approximately 20kms away from his village was constructed and commissioned in 2017 by President Yoweri Museveni to take care of such patients but it closed down. Odur is now worried that his two remaining sons will also eventually nod to their graves too.

Richard Lukica, a concerned parent in Ajan village, Lamola Parish in Odek explains that several parents cannot engage in productive work as they have to look after their affected children to shield them from seizures that result into burns from fire and drowning.

The Omoro acting District Health Officer, Robert Ongom says no new infections have been reported since 2015. He however says that the syndrome is still a burden to 120 households largely in Odek sub county. He said the district continues to treat the children with anti-seizure tablets through outreach programs and refer them to Gulu Regional Referral Hospital for further management in severe cases.

The Omoro district LC 5 chairperson Douglas Peter Okello Okao says Hope for Humans closed down due to financial constraints and handed over the center to the local government. He also said in the 2017/2018 financial year, the government allocated Shillings 700 million to run the center but the funding was inadequate.

The State Minister for Northern Uganda, Grace Freedom Kwiyocwiny says reopening of the nodding treatment centers can be facilitated when the district local governments include the plan in their budget. Children with the syndrome require relentless monitoring, because a seizure could attack any moment yet the condition inhibits their ability to make quick decisions.

The exact cause remains unknown but some researchers attribute it to parasitic nematode, onchocerca volvulus to be responsible for both river blindness and nodding syndrome while another theory is that the syndrome is caused by the blackfly.

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