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Food, Drug Shortage Cripples Recovery of Nodding Syndrome Patients :: Uganda Radionetwork

Food, Drug Shortage Cripples Recovery of Nodding Syndrome Patients

Dr. Denis Omoya Ochula, the Acting Lamwo District Health Officer acknowledged that the supplies of medicine for patients suffering from nodding syndrome have been inconsistent for the past year.
08 Mar 2024 10:51
One of the nodding syndrome patient in Tumangu village in Labongo Akwang Subcounty, Kitgum District.

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The shortage of food supplements and vital anti-epileptic medicines are hindering the recovery of nodding syndrome patients in various parts of the Acholi Sub-region.   

Nodding syndrome, a neurological illness characterized by involuntary nodding, epileptic seizures, dripping saliva, and stunted growth was first detected in 2008 in Northern Uganda.      

It has since affected some 5,319 children mainly between 5 and 15 years in Omoro, Pader, Lamwo Kitgum, Gulu, and parts of Nwoya districts.      

Local leaders however say while the government and partner non-governmental organizations adequately supplied food and medicines to the patients in the past, the supplies are now inconsistent and sometimes lacking.       

Patrick Okot is a member of the Village Health Team in Palabek Abera Sub-County in Lamwo District, one of the areas affected by the mysterious syndrome. At least 102 patients are currently living with the syndrome in the area out of the total 332 cases of nodding syndrome registered in the entire Lamwo District.      

Okot told Uganda Radio Network in an interview over the weekend that since 2018, households with patients suffering from nodding syndrome haven’t received food supplements from the government.       

According to Okot, most of the patient's conditions have now deteriorated since their parents or guardians can’t afford nutritious meals, a problem he says has been exacerbated by food insecurity owing to climate change.   

 Luo bite 

 //Cue in: “I Palabek Abera…   

Cue out:…ikeno dong peke.”//    

Okot also notes that the patients are facing an acute shortage of drugs meant to stabilize the condition of the patients suffering from nodding syndrome.       The nodding syndrome patients receive Carbamazepine and Sodium valproate, all used for the treatment of partial and generalized epileptic seizures.       

However, according to Okot, the medicines aren’t available in Palabek Abera Sub-County, adding that sometimes patients pay up to 60,000 shillings for a 30 km journey to Palabek Gem Health Center III in any case they are available.    

Luo Bite

//Cue in: “Yat I kare…  

Cue out:…Alib pyer abicel.”//      

Dr. Denis Omoya Ochula, the Acting Lamwo District Health Officer acknowledged that the supplies of medicine for patients suffering from nodding syndrome have been inconsistent for the past year.       

He says patients have now resorted to getting vital medication from the nearby health facilities in Kitgum district while those whose conditions are dire are treated through outreach programs initiated by the Lamwo District health department.  

//Cue in: “For the last…  

Cue out:…our outreach teams.”//      

In Lamwo alone, so far 29 children have died from the syndrome according to Dr. Ochula since it was detected nearly 15 years ago.   He attributed the deaths of the victims to malnutrition, drowning, fire incidences, and relapse of the patients as a result of improper care.      

Rogers Edward Ochan, the National Medical Stores Coordinator for Northern Region however disputed the claims of nodding syndrome medicine shortages and instead blamed the focal point persons for poor coordination.      

In the neighboring Kitgum District, where 476 cases of nodding syndrome have been reported over the past years, the situation isn’t any different.       

Joe Otto, the Nodding Syndrome Focal Point person in Tumangu village in Labongo Akwang Sub-County, says the last known distribution of food aid to households of victims of nodding syndrome took place in 2022.       

Otto however says the quantity delivered at the time wasn’t even enough and notes that the majority of families with nodding syndrome are currently struggling to offer nutritious food to their children.     

According to Hellen Acan, a mother to 28-year-old Joyce Aromorach, one of the victims of nodding syndrome in Tumangu village, in Labongo Akwang Sub- County proper feeding remains a big hurdle for her daughter's recovery.       

Acan who is a widow says because of her daughter’s condition, farming has become a problem since she has to attend to her daughter at all times fearing she could wander away or fall into fire.      

Dr. Alfred Mubangizi, the Coordinator of Neglected Tropical Diseases at the Ministry of Health however notes that the government made strides in the past to empower households of nodding syndrome patients to carry out agriculture on their own.    

According to a report released last week by the Parliamentary Committee on Health, the office of the Prime Minister reportedly provided a total of 5,150kgs of beans and 10,300kgs of posho, mattresses, and bed sheets to the affected families/victims in 2019.   

Additionally, the reports indicated that families in Gulu District received a total of 18 million shillings to support nodding syndrome patients, while in Omoro, 13 groups received 780kgs of soya beans, eight oxen, and four ox ploughs, and funds to open 24 acres of farmland.       

But members of Parliament under the Acholi Parliamentary Group (APG) in their findings following their separate visits over the weekend to Omoro, Pader, Kitgum, and Lamwo districts disputed the report.    

According to Statistics from Archbishop John Baptist Odama Care Center Kitgum (AJBOCCK), a total of 545 patients have died from nodding syndrome in the Acholi sub-region since 1998. In 2015, the government released a report linking the cause of nodding syndrome to blackflies.

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