By Denis Opoka (Kitgum, Uganda)
Four years ago, after the departure of Hope for Human, a humanitarian Organization providing care to the Nodding syndrome patients in Northern Uganda; life has not been easy for the victims.
Since then most of them had their condition deteriorated while many have also died to lack of proper care by the caregivers or parents while others were left to live in unfriendly conditions.
In 2016, Hope for Human, an American Humanitarian Organization, which was founded by Suzanne Gazda, neurologist from San Antonio Texas, United State, constructed two care centers for nodding syndrome patients in the districts of Kitgum and Omoro.
Each center was reportedly constructed at the cost of Ugshs 150 million ($390,000) and at the centers the nodding syndrome patients would receive healthy nutrition, clean water and other supportive social services as well as treatments among others.
However, in 2018, the organization suddenly ended its operations in the region due to financial constraints leaving thousands of the affected children and their caregivers to survive on well-wishers with little government support.
The departure of the organization left the parents, districts and also the government with the burden of taking care of these patients (Nodding disease) leading to deterioration of health condition of the victims and subsequently death.
“The sudden closure of the treatment center was the worst thing to happen to us and our children because they were safer and well cared for at the facility” said Casimiro Oroma, 58, a resident of Teolam village in Odek sub-county Omoro district who has a daughter and two sons affected with Nodding syndrome.
Michael Odoki,a resident of Labworomor village in Labongo Akwang sub-county Kitgum district says caring for the nodding syndrome patient since the closure of the treatment center has become an uphill task for him and the entire family due to resource constraints.
“These children affected by the nodding syndrome need proper nutrition since they eat a lot and me being a peasant’s farmer it has become hard to provide some of the food nutrients for my two children affected by the disease” he said.
Odoki, a farmer who had three children affected by this disease, says one of his sons passed on two years ago after he was taken back home following the closure of the treatment center in 2018.
Christine Aloyo, a resident of Cubu Village Palabek Abera Sub-county Lamwo district whose four children were diagnosed with the disease reveals that health status of his children has been so alarming and she consequently lost three of them between 2019 and 2020 after they were returned home from the closed treatment center in Omoro district.
“The only surviving one is severely deformed, unable to talk or walk, suffering numerous health complications due to poor feeding” She reveals.
Aloyo is bitter that the treatment center in Tumangur village in Labongo Akwang sub-county Kitgum district which is about 30 kilometer away despite its commissioning by president Museveni in 2017, has never served its intended purpose because it closed down immediately.
In Pader district and Angagura Sub-county in particular, between 2018- June 2022, 42 nodding syndrome patients reportedly died, this translates to almost every month a patient dies of nodding syndrome.
Boniface Ongom a resident of Lapaya village Angagura sub-county who is father to two children suffering from the disease says to ensure the safety of his children, he ties them with rope under the tree in the compound whenever he is leaving home so that they do not fall into fire or drown in water when they get tempted to go swimming.
“We are left with no option other than treating them in such inhumane way for their safety and also giving us time to look after our other normal children” he says
Since the outbreak of the mysterious disease, according to the data obtained from the health departments of the affected districts, total of 535 deaths have since been reported across the four affected districts; with Pader registering the highest (314), Kitgum (179), Omoro (24), and Lamwo (20.
Center for Disease Control defines Nodding Syndrome as an unexplained neurological condition characterized by the continuous nodding of the head, often accompanied by convulsion and staring spells, which affects children between 5-15 years leaving them stunted physically, mentally and with degenerated nerves.
The ailment that the World Health Organization (WHO) says has no set of causes was first documented in Tanzania in the 1960s, then later in South Sudan in 1990s and in northern in 2000s.
The mysterious ailment plagued villages in rural northern Uganda majorly in Acholi sub-region and according to the data obtained from Minstry of Health Uganda website over 3,000 children are affected by the disease in the four districts of Kitgum, Pader, Omoro and Lamwo.
Joe Otto who was the first Village Health Team-VHT in Northern Uganda to report about the strange illness to the Kitgum health department in the mid 90s and currently double as the coordinator Kitgum Village Health Teams on the fight against the mysterious disease, says since the departure of an American benefactor in 2018, the nodding syndrome patients have been left without adequate healthcare making life very miserable for the parents or the caretakers.
“In most cases these parents normally tether the nodding syndrome patient with rope inside their house or under a tree to prevent them from loitering” he says.
Recently, Gulu Archdiocese established Archbishop John Baptist Odama Care center a non-profit making faith based organization under Gulu Archdiocese established a care center for the nodding victims at St Marys’ Kitgum Mission Parish in Kitgum Municipality, the center is for the critically ill nodding patients.
Rev. Fr Anthony Nyeko, the Executive Director Archbishop John Baptist Odama Care Center, says the center is meant to cater for over 512 patients but due to the financial challenges, currently they have only admitted 5 patients who were critically ill.
“At admission, some of them (patients) were unable to walk, talk or even eat by themselves but by God’s grace there is great improvement in the health within the few week they have been here, because most of them can now walk without being supported” he says
Dr. Henry Otto Okello, the Kitgum District Health Officer-DHO, reveals that the last case of the disease in the district was reported way back in 2015 and currently the district is managing those old cases.
“With the help of the village health teams-VHTs, the district is managing the victims from their respective homes/villages, with the exception of the critically ill who are always admitted at the health facilities” he says.
Justine Ojok, the Nodding syndrome focal point person Omoro district, says the disease is still a burden to the affected families/household in Omoro district since they have little or no time engaging in other productive activities.
“The district continues to treat the affected children with anti-seizure tablets through outreach programs and others who critically ill are referred to Gulu Referral Hospital for further management in severe cases” he says
Denis Omoya Ocula, the Lamwo District Health Officer reveals that as the health department of Lamwo district several interventions were put in place to address the burden these parents, caregivers and the nodding victims are going through.
“There is occasional distribution of food and provision of integrated clinical care to the nodding syndrome victims in Lamwo district” Omoya reveals.
Sisto Oyet, the Lamwo district chairperson disclosed that Lamwo district local government has a plan of skilling the caregivers/parents of the nodding victims with vocational skills such as weaving, tailoring among others.
“This is to ensure that caregivers gets livelihood skills to sustain their living since most of their time are being spent looking after victims” he says
Douglas Okello Okao, the Omoro district chairperson, says the district is unable to maintain the treatment centers constructed by Hope for Human, due financial constraints.
Santa Okot, the Aruu North County Member of Parliament in Pader district urges the government to build a rehabilitation centre for the infected children from where they can be closely monitored.
The Minister for Northern Uganda in the office of the Prime Minister, Grace Freedom Kwiyocwiny says the reopening and rehabilitation of the nodding treatment center can be facilitated when the district local government includes the plan in their budget.
In August 2022, Parliament of Uganda directed the Auditor General to conduct a forensic audit on the Shs1.3 billion allocated to support nodding disease affected persons which was allocated by parliament in March 2018 and has reportedly never been accounted for.
The directive by parliament followed the adoption of a motion tabled by Kitgum District Woman Member of Parliament, Lillian Aber urging the government to prioritize interventions into nodding disease in Northern Uganda.
Aber, in her motion, urged the government to ensure the appropriate use of funds allocated, to fast track the operationalization of facilities for the disease and train personnel to intervene in treating the disease.
Parliament in 2018 authorized the government through the Ministry of Finance to spend Shs 1.3 billion for the revitalization of the intervention for nodding syndrome in Northern Uganda and it was reported that the fund has never been accounted for citing corruption.
Anifa Kawooya, the Minister of State for Health in charge of General Duties said that the government is alive to the challenge of the nodding syndrome and whoever will be found to have been swindled the Nodding syndrome fund will be held accountable.
It’s reported that in 2014, Ugandan scientists took to the United States brain samples and frozen tissues of children between 12-15 years who had died of nodding syndrome and had developed aggressive behavior for a broad examination, the results showed that the victims had a high concentration of crystal like material or lesson in their brains.
Dr. Silvester Onzivua, a pathologist at Mulago National Referral Hospital says that there is “a conspiracy of silence” about nodding syndrome by the Ministry of Health.
Dr. Onzivua disputes past research that suggests that nodding disease is related to onchocerciasis which is caused by black flies.
“Onchocerciasis has been affecting people since time immemorial, but my research points out that nodding syndrome has affected children only born between 1993 and 2005”, he urges.
According to Dr. Onzivua, the Ministry of Health’s insistence on linking nodding syndrome to black flies is blocking further research on the ailment.
Dr. Onzivua points out that there are no definite criteria for diagnosing nodding syndrome because there is no machine for testing it, so any diagnosis should take time, not a few days like the Ministry of Health did with the suspected new cases.