The parents of children affected by the nodding disease - Uganda’s walking dead, as they are now refereed to in Uganda (sic) - are increasingly resorting to herbal treatment as the disease continues to baffle the medical fraternity.
The affected communities are worried that the drugs and treatment they receive from the health centres are not making any significant difference.
In Pader parents have turned to a traditional healer who even claims to cure HIV/AIDS.
On Wednesday Mr Ojara Alfred whom the residents believe has the power to destroy the disease, treated nodding children in Ojuru village in Koyo -Lalogi parish, Lapul sub-county in Pader district.
Margaret Atto 65 and mother to Akello Stella 15 is a resident of Koyo-Lalogi. She has been receiving drugs from a clinic in Gulu but say that she has seen very little improvement.
Atto looks back to the happy days in her homestead prior to her Akello being attacked in 2007; she could not have known that a strange disease was lurking around her daughter.
“This disease is strange and never existed before we went to the camps, I feel scared and sad about it,” she said holding her chin in sorrow.
“She started to fall down and turned aggressive to everyone. She lost her abilities to speak 2010. The drug which I secured from a clinic in Gulu has never relieved her, today is just another trial, I will try anything to make her better” Atto who looked desperate and distressed chokingly said.
“When I heard he was coming, I never hesitated and carried her behind me this long distance to meet him,” she said.
“My son we are here to seek alternatives, am struggling because she is still alive,” Atto said.
Atto is a widow and has no one to help her either take the child to hospital or care for her at home.
“One day we were soaked by the rain on seven different occasions while walking to the health center to get drugs, its patience and luck, sometimes drugs run out and we resort reciting prayers,” she said.
Koyo Lalogi is about 70km to Atanga health centre III where she had to brave the scorching heat along the dusty road twice a week to seek medical services two years ago.
Akello has scars all over her body as a result of injuries sustained whenever she falls.
The medicine given by the traditional healer is a plant root of a climber in the family of vine which is crushed, dried and mixed in a bottle with clean water.
The bitter root which is taken orally is dozed between 3.5 to 4 grams a day according to age and weight of the child.
Mr Mathew Opira, the father of Charles Okello who is also suffering from the disease says that he doesn’t know what will improve his son’s condition anymore.
“It’s difficult to state whether the herb or drugs that will improved my child health,” Opira said.
“Am here to also seek new alternatives, because I am desperate” he added.
Opira’s son, Okello is a primary three pupil of Koyo-Lalogi Primary School but has been attending school due to the illness.
The school headteacher Mr Dickens Can-lit empathizes and says that everyone must worry about this disease.
“The cases of nodding disease has been very rampant; parents who are afraid have decided to hold their children home because they can catch the disease whose cause is unknown,” Can-lit said.
Over 10,000 children in Acholi region suffer from nodding disease and nearly 3000 cases have been reported in Pader district alone.
Out of the total 757 pupils in Koyo Lalogi, only 323 have reported back to school due to the nodding disease.
Mr Ojara said that he he does not cure nodding disease but can control seizures, headaches and other symptoms.
“I do treat nodding disease and when the doze is given, it alleviates the symptoms and body burns, it also brings back appetite to malnourished children and clears meningitis and fever,” said Ojara.
Thirty years in practice, Ojara’s activities have lately gained attention of the Ministry of health.
A letter by the director of chemopathological research Institute Grace Kyeyune in 2008, directed medical officials and stakeholders in Pader district, to “work with Ojara into establishing the perception and benefits arising from his medicine in treating HIV/AIDS, Malaria and nodding disease.”
Pader district authorities have however accused Ojara of deterring HIV/AIDS patients from accessing ARVs from health centres and his purported treatment of Nodding disease.
A research report from the Chemical laboratory to his medicine indicates no level of toxicity.
Government is using Valporate to suppress the syndrome of the disease but there is no cure yet.
Three treatment centers have been opened in Atanga Health center III in Pader district, Kitgum hospital and Palabek Kal health center III in Lamwo district.
In Atanga, only four children have been retained in wards while others have been discharged according to medical officials.
The government says it has shs7billion for the treatment and care of children with the disease but has rejected any notion of declaring the region a disaster zone.
The situation in remote villages remains dire as parents cannot afford to transport their children long distances to health centres to receive drugs.
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