H5N1

South Sudan: Nodding syndrome raises fear in Maridi state

Looking for local news reports of the suspected Ebola case in South Sudan, I can across this item from December 12 in the Juba Monitor: Nodding Syndrome raises fear in Maridi state. It's the first report I've seen on the syndrome in a long time. Excerpt:

“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 clinical officers that were 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.

Uganda: We must not forget nodding syndrome children

It's been too long since I've looked for news on this strange neurological condition. Via the Daily Monitor, an editorial: We must not forget nodding children.

The plight of children suffering from nodding syndrome in some districts of northern Uganda remains precarious, and efforts to give them proper care seems to be waning. 

On Friday, this newspaper reported that five children with nodding syndrome had drowned in Omoro District on separate occasions. According to area leaders, the children, aged between 14 and 15 years, were said to have died in January and June in different villages in Odek Sub-county after developing seizures at water points.  

The deceased children, according to Odek Sub-county chairperson Richard Labongo Okello, are some of those who had been reintegrated into the communities after undergoing rehabilitation at the Odek nodding syndrome care centre. Some of the children, however, relapsed due to poor living conditions in the communities. 

The bigger dilemma for the communities where nodding syndrome is still rampant is what the future holds for the children suffering from this mysterious condition.  

Last week, we reported that Omoro District leaders had asked government to take over the Nodding Syndrome Care Facility in Odek Sub-county. 

The centre had, since 2012, been supported by Hope for Humans, a non-governmental organisation, which was providing medical and personal care, special schooling, and nutritious meals to children with nodding syndrome. In July, the organisation’s chief executive officer, Ms Suzanne Gazda, said the board of directors had made a ‘difficult decision’ to dissolve Hope for Humans and transition the children into the care of Ugandan government. 

Ideally, this centre should still be taking care of children, including carrying out community outreach programmes in homes of those recovering from nodding syndrome. But due to lack of funds, the 29 children still living at the centre and another 237 who were rehabilitated and reintegrated in their communities, are not receiving the care they need to prevent possible relapse.  

Although Ms Grace Kwiyocwiny, the State Minister for Northern Uganda, recently visited the centre and said the government would partner with the district and other stakeholders to ensure the centre is supported, such assurances should be followed with immediate action. These children have suffered for far too long. Their parents, guardians and entire communities have been condemned to a life of misery since nodding syndrome was first discovered in the area.  

For communities that have suffered a two-decade war under Joseph Kony’s Lords Resistance Army, nodding disease is like another war, a war on their children, their future. Lest we forget, nodding syndrome is still rampant in northern Uganda. The affected children deserve proper care.

Mystery nodding syndrome may be triggered by parasitic worm

Via Science: Mystery nodding syndrome may be triggered by parasitic worm. Excerpt:

Between 1990 and 2013, thousands of children in war-torn South Sudan and northern Uganda suddenly developed a severe and puzzling form of epilepsy. When exposed to food or cold temperatures, affected children nodded their heads uncontrollably. Over time the seizures often worsened, leaving the children severely disabled. Many died of malnutrition, accidents, or secondary infections. 

In some communities, roughly half of families had at least one child with the condition, called nodding syndrome; by 2013, an estimated 1600 children in Uganda were affected. But the cause of the devastation was a mystery. Now, a study finds that a parasitic worm often found in the children might trigger the body’s own defenses to attack neurons. 

The study doesn’t prove the worm is the culprit, but it “is the first to show that a cause-effect relationship is plausible,” says Hermann Feldmeier, a parasitologist at the Charité University Hospital in Berlin, who was not involved in the study.

The rash of cases in Uganda and South Sudan triggered an intense hunt for the cause, but searches for viruses, bacteria, environmental toxins, genetic factors, and nutritional deficits all came up empty. One key clue: Areas with nodding syndrome also had high rates of onchocerciasis, an infection with the parasitic worm Onchocerca volvulus. Spread through the bites of black flies, which breed in swift-flowing streams, the worms can invade the eye, and the infection is commonly known as river blindness. The World Health Organization estimates that at least 18 million people, most in sub-Saharan Africa, are infected. 

Researchers had suggested as early as the 1960s that high rates of epilepsy in Tanzania, with similar nodding symptoms, might be related to onchocerciasis. Others have noted that children with nodding syndrome are more likely to be infected than their healthy peers. But there’s no evidence that the worm invades the brain or directly causes seizures. 

Some researchers suggested that the worm instead causes an autoimmune reaction that damages the nervous system. Searches for antibodies that might play an autoimmune role had come up empty. But neuroimmunologists Avindra Nath and Tory Johnson of the National Institutes of Health in Bethesda, Maryland, decided to use an improved protein chip to screen for antibodies to thousands of proteins at once.  

The new tool proved its worth. Blood from nodding syndrome patients reacted strongly to four proteins; in the case of one protein, called leiomodin-1, patient sera reacted 33,000 times more strongly than did sera from unaffected controls. The researchers then looked for the antibodies causing the reaction. As they report this week in Science Translational Medicine, antibodies to leiomodin-1 turned up in 29 of 55 nodding syndrome patients but only 17 of 55 controls. Patients also carried much higher antibody levels than controls.

Are Nakalanga syndrome and nodding syndrome the same disorder?

Via PLOS Neglected Tropical Diseases: Nakalanga Syndrome: Clinical Characteristics, Potential Causes, and Its Relationship with Recently Described Nodding Syndrome. The abstract:

Nakalanga syndrome is a condition that was described in Uganda and various other African countries decades ago. Its features include growth retardation, physical deformities, endocrine dysfunction, mental impairment, and epilepsy, amongst others. Its cause remains obscure. 

Nodding syndrome is a neurological disorder with some features in common with Nakalanga syndrome, which has been described mainly in Uganda, South Sudan, and Tanzania. It has been considered an encephalopathy affecting children who, besides head nodding attacks, can also present with stunted growth, delayed puberty, and mental impairment, amongst other symptoms. 

Despite active research over the last years on the pathogenesis of Nodding syndrome, to date, no convincing single cause of Nodding syndrome has been reported. 

In this review, by means of a thorough literature search, we compare features of both disorders. We conclude that Nakalanga and Nodding syndromes are closely related and may represent the same condition. Our findings may provide new directions in research on the cause underlying this neurological disorder.

Uganda: Health workers abandon nodding syndrome patients

Via allAfrica.com, a September 17 report from the Monitor on a disease I've been neglecting: Uganda: Health Workers Abandon Nodding Syndrome Patients.

Health Workers in Kitgum District who are supposed to attend to children recovering from nodding syndrome have abandoned their work due to lack of facilitation. 

The health workers are tasked with carrying outreach programmes in Tumanguu in Akwanga Sub-county, Matidi in Matid Sub-county and Okidi Health Centre III to assess the progress of children recovering from nodding syndrome and epilepsy. 

The district focal person for nodding syndrome, Dr Geoffrey Akena, said last week that they used to be more than 10 health workers, but due to lack of facilitation, the number has reduced to only four. 

"Workers are demoralised. For the last nine months, there has been no funds given to the district to run the activities," Dr Akena said. 

He said every time they go for outreaches, they are supposed to be given a daily allowance of Shs17,000 [US$4.64] each. However, this has not been the case and the health workers are discouraged yet the out reaches are very crucial. 

"At the moment, there are five children that have been re-admitted, two with severe malaria, two with serious convulsion, and one with burns. If the health workers regularly checked on the children, such issues would be managed," he said. In a single outreach, health workers are able see between 15-30 children. 

The coordinator nodding syndrome in the Ministry of Health, Dr Bernard Opar, says he is not aware of the issue, but will visit the district in the course of this week to assess the situation. 

Kitgum has 583 cases of nodding syndrome.

Uganda: Nodding syndrome kids resume school

Via New Vision, a May 7 report: Nodding disease kids resume school. This is encouraging news:

GULU – A total of 37 children out of 330 who suffered the nodding disease in the northern Uganda district of Gulu have resumed studies after registering tremendous improvement. 

They received treatment from Aromo Wang Lobo Nodding Syndrome Treatment and Rehabilitation Centre in Lamola parish, Odek sub-county. 

The little-known disease – also known as nodding syndrome – only affects children of mostly between the ages of 5 and 15. It disables a sufferer both mentally and physically. 

Michael Chan-kara, the Gulu district drugs inspector, who also doubled as the district coordinator of the nodding syndrome, said most of the children at the centre improved greatly. 

He added that five of the victims died. 

The facility is being managed by Hope for Humans, a non-governmental organization (NGO). 

According to the LC5 chairman of Gulu, Martin Ojara Mapenduzi, the district resolved that families affected by the nodding syndrome be supported by a number of government programs like NUSAF,Operation Wealth Creations – formerly NAADS – and Restocking program. 

Mapenduzi, who doubled as the secretary finance, planning, administration and investment, said families have already been supported with 47 animals under the Restocking program. 

Also, the Aromo Wang Lobo treatment centre has been reinforced with five beds and mattresses. 

The district leader called on the parish development committee and sub-county leaders to ensure that they place affected families as first-priority beneficiaries of any government and NGO support to enable them become self-reliant and take better care of their children. 

On her part, the district secretary of health and education, Rose Amono Abili said the members of the affected families and communities should always be the watchdogs of the affected children to save them from abuse by crime perpetrators who may want to take advantage of their vulnerability.

Uganda: Acholi chiefs demand report on nodding syndrome

I've been neglecting this strange condition. Via Uganda Radio Network: Acholi Chiefs Demand Report on Nodding Syndrome. Excerpt:

Ker Kwaro Acholi, the Acholi cultural institution has asked government to release its findings on the causes of nodding syndrome, a mentally and physically disabling condition that attacked hundreds of children in Northern Uganda. 

Okin Polly Phillips Ojara, the Prime Minister of Ker Kwaro Acholi said the delay in releasing the findings is disturbing. He was speaking to families of the affected children in Tumangu village in Akwang Sub County in Kitgum district. 

Okin said that although the Center for disease Control (CDC) conducted thorough investigations on the mysterious health condition, very little information has been released to the affected communities about the disease. Even the fate of children taken to America from Lamwo district for medical examination has remained unknown, Okin added.

CDC: Prevalence of nodding syndrome — Uganda, 2012–2013

I've seen very little coverage of this strange disease in recent months, so this report in the July 18 Morbidity and Mortality Weekly Report is welcome new information: Prevalence of Nodding Syndrome — Uganda, 2012–2013. Excerpt from the discussion section:

Although an illness similar to NS has been reported in Tanzania since the 1960s, NS was only recently reported in South Sudan and Uganda. In 2009, the Ugandan MOH was notified of reports of possible NS cases in Kitgum District. These reports had apparently been increasing since 2003 (1), and few had been reported from other districts despite NS being widely publicized. 

Studies have demonstrated that NS is a seizure disorder with a sentinel and defining feature of paroxysmal episodes during which the head bobs forward repeatedly because of atonic seizures (1). A case series in Uganda demonstrated abnormal electroencephalographic (EEG) and brain magnetic resonance imaging findings in children with NS, confirming that it is a type of epilepsy, and primarily affects children aged 3–18 years (1). 

In South Sudan and Uganda, studies have indicated associations of NS with current or prior infection with the parasitic helminth Onchocera volvulus and vitamin B6 deficiency (4,8), but the etiology remains unclear. The mortality rate of NS is unknown, but deaths from injury similar to those associated with other forms of epilepsy have been reported (9). No proven effective treatment is available, but patients are empirically managed for their seizures with anti-epileptic medications. 

The findings in this report are subject to at least four limitations. First, the census used for the sampling frame might have missed cases and resulted in an underestimation of NS prevalence. 

Second, the classification of NS, similar to epilepsy, relies on caregiver report, because self-report is not reliable and confirmatory techniques such as EEG are not always available (10). Such information is subject to misclassification and recall bias, especially when someone other than the primary caregiver is being interviewed. 

Third, NS questions used in this investigation were modeled on a previously validated epilepsy questionnaire (10); however, misclassification might still have resulted in over- or underestimation of NS cases and prevalence. 

Finally, nonresponse bias might have occurred because respondents were called to a meeting point, which might have excluded persons who were far away or unable to walk. 

The prevalence of probable cases of NS was systematically assessed for the first time in the three northern Ugandan districts where most NS cases have been reported, and found to be 6.8 probable NS cases per 1,000 children. This investigation was the first to attempt to use the consensus case definition to determine prevalence (7). 

Modifications were necessary because certain criteria were difficult to assess based on caregiver recall or were not specifically defined. Also, the minor criterion of clustering alone did not clearly differentiate suspected from probable cases in this study population, but might be more useful in combination with other criteria or when used in other populations that have not already been screened. 

These data can inform future decisions on consensus case definition modifications. These results can also provide a basis for additional studies to establish mortality rates and treatment effectiveness, and for future studies in other areas affected by NS, such as South Sudan and Tanzania. 

This information is critical for guiding allocation of health-care resources to provide appropriate management of persons with NS in northern Uganda, and for designing a cohesive strategy to address this emerging public health problem in sub-Saharan Africa.

Uganda: Health Ministry sends experts to study extent of nodding syndrome

Via New Vision, a May 14 report that's remarkable if true: Health Ministry sends experts to study extent of Nodding syndrome.

The Ministry of Health  has sent a team of 124 medical doctors to the districts that were affected by the Nodding disease syndrome. 

The team is expected to assess whether the disease has been completely wiped out.  Health Minister Dr Ruhakana Rugunda says the doctors are operating in the Districts of Gulu, Kitgum, Pader, Lamwo among others to ascertain whether there are some new cases of nodding disease because the ministry has never recorded any new case since 2012. 

Rugunda says  ten members of a family affected by the disease have been flown to US for further medical examinations to find out whether the disease is genetic or not.

Stories about nodding syndrome have been so scarce for so long that I'd stopped looking; I found this one just by chance. If new infections have really ceased, that's a remarkable development, and it's equally remarkable that a family of ten has been flown to the US for testing.

Uganda: Health ministry demands accountability for nodding-syndrome funds

Via RedPepper.co.ug, a February 19 report: Health Ministry Queries Accountability for Nodding Syndrome Funds. To give you some idea of the funding in question, 1 million Ugandan shillings = US$406. Excerpt:

Ministry of health has threatened to withhold funding for the nodding syndrome following delays by the beneficiary districts to account for over 800 million shillings.

The money in question was disbursed in the last two financial years. However, a circular issued by the health ministry last month, indicts that districts and hospitals in Northern Uganda, which benefited from the money are yet to fully account for it.

According to the circular Kitgum, Amuru and Gulu districts received 177 million shillings, 99M and 99 Million shillings respectively but to date have not accounted for a penny.

Pader district received 237M but only accounted for 76Million, Lamwo received 158M and accounted for 57M and Oyam received 93m but only accounted for only 31M.

Gulu regional referral hospital received 27M but only accounted for 12m and Lira regional referral hospitals has not accounted for the 109 Million shillings received.

Now, Dr Asuman Lukwago, the permanent secretary ministry of health says the districts will not recieve additional funds unless they account for the previous funds as stipulated in the financial and accounting regulations.

Dr Bernard Opar, the coordinator nodding syndrome ministry of health says the districts delayed to submit accountabilities forcing the ministry to demand full accountability.

Opar says despite the fact that some of the district submitted their accountability as a result of the pressure from the ministry; it is yet to verify the figures.

When contacted some of the responsible district officials denied allegations that they had failed to account for the disbursed funds. The instead blamed the problem on a communication gap between the ministry and districts.