Lockdown Affecting Recovering Nodding Syndrome Patients in Acholi

Majority of the patient’s caretakers say they haven’t received any form of food relief from the government to feed their children in a long time.
Sunday ayet, one of the patients recivering from nodding syndrome bites a raw mango at their home in Okidi central village in Labongo Amida Subcounty. Photo By Julius Ocungi

Audio 9

The health condition of patients recovering from nodding syndrome in the districts of Pader, Kitgum and Omoro is deteriorating during the lockdown. 

Majority of the patient’s caretakers say they haven’t received any form of food relief from the government to feed their children in a long time.

Nodding Syndrome, a mentally and physically disabling syndrome affected an estimated 3,000 children, between the ages of 5 and 15 in Acholi Sub-region.

Santina Apoto who is visually impaired and a mother to one of the recovering patients, says that efforts to feed the children every day is difficult yet he is on strong treatment.

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  “Up to now, they haven’t eaten anything, this has been a challenge that started long before coronavirus. These three children are on very strong medication that requires them to eat regularly, with this COVID-19 pandemic, things have even become harder, I can’t be taken around to beg for money like used to,” Says Apoto.

She called on government officials in the district to come to their rescue before the situation gets out of hand.

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“unless a good Samaritan helps me on a good day with cassava, sometimes these children end up only eating boiled green vegetable, these are the challenges I have. They take their medication twice a day and it’s very strong yet they only eat once a day, I appeal to our local leaders to rescue me out of this problem,” She says.

Cerefino Onek, an in-law to Apoto says sometimes the ailing children are forced to look for food by themselves since their mother is unable to see. He says family members have tried supporting the children but notes that due to COVID-19 lockdown, many have failed due to limited resources.

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“This old woman is in a lot of problems, if she was able to see, she would have been able to work and fend for her children, sometimes her children eat late at 3 pm. They have to look for green vegetable on their own and just boil it with salt for lunch, even getting money is now a challenge to her,” He says.

Kitgum District has a total of 544 patients recovering from nodding syndrome who receive treatment from Kitgum General Hospital.

Barbra Rose Olum, the in-charge of Mental Health Department at Kitgum General Hospital where nodding syndrome patients are treated from, says that they last received food aid from the government last year.

In 2018/2019 financial year, the district received 309 million shillings from the government which was part of shillings 1.4 billion government disbursed to Acholi region to boost their response in nodding syndrome emergencies. 

Kitgum District LCV Chairperson Jackson Omona says that despite overwhelming demands from nodding syndrome afflicted families for relief food, the district is currently unable to provide.

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In Odek Sub-county, Omoro District, the situation is not any better for some 281 patients recovering from nodding syndrome.

Jackeline Apiyo, whose 19-year-old daughter is recovering from nodding syndrome in Akoyo village in Odek Sub County, says she has run out of food for the family. She notes that although there has been a steady supply of medication, food supplement to her ailing daughter has remained a challenge adding that this has forced them to eat once a day or sometimes sleep on a hungry stomach. 


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“These children require eating all the time especially after having seizures and convulsions, but there is no food. Their Parents are trying to look for food but with the lockdown, sometimes its impossible, we appeal for support in form of soap to maintain hygiene and maize and beans seeds for growing,” says Apiyo.

Douglas Okello Okao, the Omoro District LCV Chairperson acknowledges the food challenges being faced by parents of nodding syndrome patients.

He says the district has now written to the National COVID-19 Taskforce and office of the Prime Minister for relief food aid to be donated to the families of children recovering from nodding syndrome.

Okao notes that cases of sexual abuses against girls recovering from the syndrome have also escalated during the lockdown citing that at least three cases of defilement and rape were registered in Odek Sub-county last month.

He, however, maintains that the children are regularly receiving medication through outreach programmes despite Odek Nodding Syndrome treatment centre remaining closed.

Dr Joyce Moriku Kaducu, the State Minister for Primary Health Care says despite the COVID-19 pandemic has affected the livelihood of several households, locals should also take advantage of this period to grow food to avoid possible cases of malnutrition among children.

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She notes that such agricultural intervention was initiated early by the government before COVID-19 outbreak to ensure the nodding syndrome affected families become self-sustainable.

//cue in: “We had a…

Cue out:…these people ox-plough.”// Some 130 have died since 2009 when it was first detected and more than 1,000 still recovering from the syndrome currently within the region.