Nodding disease patients go 2 years without drugs

Locals have complained about the shortage of drugs for patients with Nodding Syndrome disease in Pader District.

 Some parents with children with nodding disease syndrome said they last received the drug consignments in 2021 and the patients have been surviving without proper medication.

 Mr Richard Opira, a resident of Awere Sub-county, said the drug supplies to the children with nodding disease syndrome have drastically reduced in the last two years.

 He said some of the patients had died as a result of drowning at the wells where they were sent to fetch water or falling into fireplaces because of their condition which makes them unstable and vulnerable.

 “We need these drugs, which help to make our children stable. Now, our children are dying simply because we lack the drugs to give them so that they stabilise,” Mr Opira said.

 Ms Santa Akoko, who has two children with nodding disease syndrome, said: “I am silently dying before my age; my children are roaming everywhere from morning to night and sometimes they do not come back home.”

 Another affected mother, Ms Santa Akello,  told this newspaper that the instability of her child has devastated the livelihoods of her family.

 According to Ms Akello, she and her family members could not concentrate on agricultural activities which is their main source of livelihood.

 “I relied on subsistence farming to provide for my family and most of my time we have to go out looking for my daughter and bring her back home; I cannot concentrate on farming,” Ms Akello said.

 The locals have urged the authorities to intervene and ensure stable supply of the drugs.

Dr Samson Ocaya, the Pader District Nodding disease syndrome focal person who doubles as Atanga Health Centre III in-charge, said the district has run out of drugs for children with nodding disease syndrome.

 “The district received the last consignments of nodding disease syndrome drugs in 2021, and to date, no drugs were delivered to the district,” Mr Ocaya said.

 He said the drugs were depleted from the district health store about four months ago and drugs for epilepsy are being prescribed for also nodding disease syndrome patients.

 According to Mr Ochaya, more than 800 nodding disease patients are in 12 sub-counties within Pader.

NMS responds

Meanwhile, Ms Sheila Nduhukire, the public relations officer for National Medical Stores (NMS), said drugs for nodding syndrome  are in its stores.

 “We have this medicine but it would be good to know if any of the facilities in Pader requested this medicine because as you know we only distribute based on orders made by health facilities, which they do not do,” she said.

About nodding disease

Nodding syndrome is a mysterious illness that affects the brain and central nervous system of children, primarily between the ages of five and 15.

The disease that mentally and physically retards children has led to rejection and other forms of child abuse such as defilement.

In 2019, researchers from the Health ministry said the disease is a result of Onchocerca volvulus, a parasite that causes nodding in children and loss of life in Acholi Sub-region.