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.
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
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
//cue in: “o aa ocito…
Cue out:…ye dong wanongo.”//
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.
//cue in: “The Ministry of…
Cue out:…government for nodding.”//
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
According to Komakech, the government also recently delivered 270 iron sheets
to be distributed to selected 15 households for the construction of permanent
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.