Gov’t to Support Nodding Syndrome Victims

Jenne Achola, a resident of Bongolaku village in Labongo Akwang Sub-county, Kitgum District is among parents in the region who aren’t happy with what they perceive as government reluctance to revitalize treatment of nodding syndrome patients.
A nodding syndrome patient lay on the floor as he waits to receieve food supplements at Odek nodding syndrome treatmnt center in Omoro in July 2018.

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The Government will continue supporting nodding syndrome victims and affected families in the Acholi Sub-region.

Nodding syndrome, a neurological disorder characterized by episodes of repetitive head nodding, often accompanied by other seizure-like activity ravaged the region, affecting children between the age of 5-10 around 2009 when it was first detected.

Some 3,000 children were reportedly diagnosed with the strange illness out of which 137 succumbed by 2017 in the districts of Amuru, Pader, Omoro, and Lamwo according to a 2017 Health Ministry report to legislators.

Until 2018, parents with children affected by the syndrome were hopeful of their children’s recovery owing to the free specialized medical care they received from two health facilities in Omoro and Kitgum Districts. 

However, the closure of Odek nodding syndrome centre in Odek sub-county and Tumangur in Labongo Akwang sub-county have significantly affected their recovery journey, with parents blaming the government for turning a blind eye on the victims.

Jenne Achola, a resident of Bongolaku village in Labongo Akwang Sub-county, Kitgum District is among parents in the region who are not happy with what they perceive as government reluctance to revitalize treatment of nodding syndrome patients. 

Achola lost her 22-year-old son suffering from nodding syndrome in April late last month after he drowned in a well, about two miles from their home.

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Achola says despite her son’s ailing condition, he was supportive to the family but lacked proper medical care to fully boost his recovery. She now says the government should consider supporting families like hers that have lost children suffering from the syndrome whose cause remains a mystery to date.

Joe Oto, the nodding syndrome focal point person for Labongo Akwang Sub-county alleges that at least 11 nodding syndrome patients have died between 2021 and April this year in his area.

Oto says the main causes have been poor nutrition and medical care for the patients who are mostly being taken by financially stricken parents.

But the State Minister for Northern Uganda, Grace Freedom Kwiyocwiny says although nodding syndrome patients and their families are facing challenges, the government hadn’t turned a blind eye on them.

Kwiyocwiny says the patients and their family members have continued to receive support from the government in form of relief food aid, medicines through medical outreaches, and livelihood support programs.

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She promised that the government through its development partners is very committed to helping the victims of nodding syndrome recover while their parents or guardians progress.

Kitgum Resident District Commissioner William Komakech says that the district has already received 300 Million Shillings from the Office of the Prime Minister-OPM for nodding syndrome affected households.

He says the fund disbursed through Northern Uganda Social Action Fund Phase three-NUSAF III will be used to procure necessary items that the affected families deem important to enable them to support their children independently.

“We have received Shs 300 million for nodding syndrome affected families. We are going to engage with the households in the district on what the money can be used to purchase for their welfare and that of their ailing children,” said Komakech.

According to Komakech, the government also recently delivered 270 iron sheets to be distributed to selected 15 households for the construction of permanent shelters.

He says although there is progress in the recovery of some patients, they are alarmed with the high rate at which girls diagnosed with the syndrome have been impregnated citing 80 of them have delivered in the last year.

Nodding syndrome patients currently receive routine anti-epileptic drugs from Kitgum General Hospital, Pajimo Health Center III and Tumangur Health Center II in Labongo Akwang Sub-county. More than 500 people were reportedly affected by the strange syndrome whose exact cause remains unclear. The government claims nodding syndrome is caused by Onchocerca volvulus spread by black flies.