The Ministry of Health has said that it is currently undertaking a research with Makerere University and Oxford University to find a cure for the mysterious Nodding Syndrome that has killed 137 children in Northern Uganda.
Nodding syndrome, a severe neurological disorder that manifests as seizures, head nodding, cognitive impairment, multiple disabilities and affects children.
Children (usually 3 and 18 years) said to have nodding syndrome present involuntary drops of the head to the chest at a frequency of 5 to 20 times per minute on two or more occasions in a previously normal child. This is why it is termed as nodding syndrome.
Other symptoms include neurological problems like cognitive decline, behavioral problems or seizures or neurological abnormalities, stunting or wasting or severe malnutrition and brain damage.
Dr Ruth Aceng, the Minister of Health told journalists on Monday that the ongoing “Doxycycline and Nodding syndrome” study is being led by experts from Makerere University, Mulago hospital, Oxford University in the United States and Ministry of Health.
“This is aimed at finding treatment and understanding the mechanism of the disease progression. The results of this study are expected in 2019,” the Minister said while addressing a news conference on Monday.
The revelation comes at the backdrop of widespread criticism from the public, Members of Parliament and the civil society towards government for its failure to prioritize treatment of the Nodding Syndrome while thousands of children continue to suffer.
A total of 137 children have so far died from Nodding Syndrome while other 2,000 pepple in the districts of Pader, Kitgum, Lamwo, Gulu, Omoro, Amuru and Lira are currently affected by the disease.
The current research follows 14 other studies on nodding syndrome including one by the Centers for Disease Control (CDC) and National Institute of Health of the United States whose findings suggested that Nodding syndrome may be an autoimmune disease, in which the immune system incorrectly attacks the body’s own proteins.
The immune system creates antibodies to fight off the parasite following infection with Onchocerca volvulus.
However, those antibodies also bind to a protein that is present in the brain cells so the immune system–incorrectly–will attack brain cells that contain that protein, which can result in symptoms of Nodding syndrome.
Government intervention
Minister Aceng said that the burden of the Nodding Syndrome by district currently stands at; 806 in Pader, 544 in Kitgum 339 in Lamwo, 323 in Gulu and Omoro, 58 in Amuru, and 13 in Lira, making a total of 2,143 cases to date.
Of the five stages in which Nodding Syndrome is classified, Stage 5 is the most severe and it presents with severe disability, and these are mostly bed ridden children. These form 5% of the total 59 cases registered in Northern Uganda. Nearly half of the 59 have died.
As opposed to what media reports have been suggesting, Dr Aceng said that government has rolled out initiatives to cater for those already infected and that some patients have recovered.
She said that in 2012, Ministry of Health established 3 treatment centers in the 3 districts of Kitgum, Lamwo and Pader as part of the response towards the disease.
“Later, government increased the number of health facilities was further increased to 7 in 2013, covering the districts of Gulu, Lira, Amuru and Oyam when nodding syndrome cases were identified in these districts following surveillance,” the Minister said.
In addition, health workers carried out outreaches to communities in order to screen and provide counselling and treatment for the affected children.
A total of 20 centers in the affected districts now receive direct allocation of medicines from the National Medical Stores for treatment of Children with Nodding syndrome.
In terms of the treatment, the Minister clarified that the 33 facilities are providing medicines and the supply is adequate in all the treatment centers.
Government through the Ministry of Health is also providing funding to procure food but only for those patients who have been admitted (In patients). Kitgum General Hospital was designated as the major referral, treatment and research center and it’s the only center that distributes food as well as provides therapeutic feeding for the severely malnourished who are admitted.
All the other children in Stages 1 to 4, who are mobile pick up their food from three treatment centers when they go for drug refills like Atanga HCIV in Pader, Kitgum General Hospital in Kitgum and Palabekkal HCIII in Lamwo.
However, food was last delivered between September to November last year.
Disease control
According to Aceng, government heightened its efforts to control vectors through aerial spraying in the affected districts.
This was aimed at eliminating the Black Fly, a vector that is associated with nodding syndrome, which through its bites transmits a worm called onchocerca volvulus which causes river blindness or onchocerchiasis.
Other measures taken included ground river dosing to eliminate breeding sites for the black fly at Apyeta bridge in Lamwo, Abam and Otwara point in Kitgum, Aruu falls and Pabit in Pader.
“With these interventions, we expect to reduce transmission of the river blindness worm that is also associated with Nodding syndrome”.
The Minister said that there have been no new cases for the Nodding Syndrome since 2012 but rather cases of epilepsy and febrile convulsions both of which are closely associated with Nodding syndrome.
She criticized the one sided reporting by one of the investigations on nodding disease done by a local television which she said was short of the successes registered by government.
“The coverage focused on 5% severely ill people and not the 25% who recovered and went back to school. Why jot talk about the good side of the interventions?” Aceng wondered.
According to the Focal Person for Nodding Syndrome at the Ministry of Health, Dr Bernard Opar, the fight against Nodding Syndrome is partly frustrated by the misclassification of the disease with some people misconstruing it with other terminal illnesses.
“Some people are born with abnormalities. When such a case is treated as nodding syndrome, it affects the chances of the patient getting treatment,” Dr Opar said.
