Some of the children affected by Nodding Syndrome and Epilepsy (Photo taken by Jane Y Carter)
By Sheila Ponnie
“In one of every two families you find a case of nodding syndrome, some are very weak, they cannot help themselves, they are fed by family members, washed and taken for long call by family members,” Maridi state Minister of Health said.
This information was released during the Neglected tropical disease Taskforce meeting held by the Ministry of Health, Amref, Health African and other health organisations on Saturday in Juba.
The objective of the meeting was to make a plan to support the affected communities in order to improve understanding of nodding syndrome, Onchocercisasis associated epilepsy in South Sudan.
Maridi state Minister of Health and Environment, Dima Hosea Aburase said that children were being isolated even those who were in school were often sent back home because of the disease.
“With the fear that nodding syndrome is communicable, that they will infect some or the rest of the children and they go home. Some are even chained because the parents find it difficult to manage them. Those who are already having mental disorder move anyhow so the situation is really devastating,” Aburase said.
Aburase added that there were limited drugs in the market due to higher prevalence of nodding syndrome in the state.
“There are some anti-Epileptic drugs like phinabaptol, Pagamazopil. Those are the ones we have in the country. These children are supposed to be put on these drugs but they are very limited among the drugs in the state. This family gets the drugs in the market since there is also high demand because the higher prevalence of nodding syndrome sometimes is not even there in the market,” he said.
However, Peter Claver Olore Amref Stuff, highlighted that they carried out door to door house hold survey where they used some community clinically officers that where trained.
“We went to eight study sites containing forty four small villages which we went through together and we reached 2511 households. Our team was able to screen 17,652 individuals so out of these, we found almost 799 individuals who are suspected to be having Onchocerciasis associated epilepsy and we confirmed 92 percent of them. This means that the other eight percent are possibly people who had other forms of mental problems and epilepsy which could not be related with Onchocerciasis based on the questionnaire which was given to guide the team,” Olore said.
Olore emphasised that nodding syndrome and epilepsy were not very different but when somebody begins getting bitten with the black files and they get infected, this will begin developing into stages gradually as it progresses.
Photo of a child affected with River Blindness, (Photo by Jane Y Carter, Technical Director Clinical Programme)
At earlier stages, most signs tend to show when people begin with nodding but at later stages these differ and some people have chronic seizure; shaking some part of the body, involuntary movement of the body.
He added that out of all these cases, they found out that forty five percent of them had history of nodding seizure.
He added that eleven percent of those people confirmed had a chronic stage of these seizures to the extent that “they lost their maceration of their sexual function abilities where you find that somebody who is 25years can be very short and can have a feet of a baby, a four year old baby and that stage is called Nakalanga,” he said.
Onchocerciasis, or River blindness is a parasitic disease transmitted by bites of small black files that breed in rapidly flowing streams and rivers.