Nodding disease hinders education in Acholi region

Many pupils in Acholi sub-region have dropped out of school due to the nodding disease syndrome which is tormenting children in the region.

According to leaders of districts in Acholi sub-region, many children suffering from the nodding disease syndrome are unable to go to school while some parents have stopped their children from going to school, fearing that they could contract the illness.

The Pader District Education Officer, Mr Charles Okidi Obole, says the most affected schools are those in Atanga, Lagut, Awer and Angagula sub-counties.

Mr Alfred Akena, the Pader LC5 chairperson, who is also the chairperson of the district’s nodding disease task force, says most of the children suffering from the disease are of school-going age.

“The future of our children is uncertain. Parents have decided to keep their children in their homes for fear that their children might contract the diseases,” Mr Akena says.

He adds that 1,700 children in the district have been affected by the nodding syndrome.

According to Pader education officials, Aruu Primary School which had 200 pupils in the first term, currently has only 95.

The Kitgum District Education Officer, Mr Celest Lamakio Odonga, says there should be mass sensitisation among the teachers about the disease so that when children experience nodding seizure while at school, the teachers can administer first aid to them.

“Due to lack of skills in giving first aid to such children, parents opt to keep their children at home with close supervision. Some teachers also distance themselves when children are attacked thinking that the disease is contagious,” Mr Odonga says.

He adds that by the end of last term, more than 200 pupils in Layam, Akwanga and Amida sub-counties were affected by the nodding disease syndrome.

The National Coordinator for the Nodding Disease Syndrome, Dr Bernard Opar, says the Ministry of Health will soon start sensitising teachers on how to assist children when they experience nodding seizure.

Due to the mental retardation caused by the syndrome, Dr Opar says the Ministry of Education will formulate a special needs programme to address the issue of such children.

By Cissy Makumbi   (email the author)

Posted  Friday, May 18  2012 at  00:00


Now adults show signs of nodding syndrome

Health officials in Lamwo District are at crossroads after nodding disease signs and symptoms began manifesting in adults.

Previously, only children had exhibited the symptoms.

The district is one of the most affected by the disease. At Palabek Gem Treatment Centre for nodding disease, at least 20 adults aged between 18 to 35 years have been diagnosed with the symptoms.

The signs of nodding disease include stunted growth leading to mental retardation, nodding seizures when victims begin to eat or feel cold. Severe seizures cause the victims to collapse, leading to injuries.

Ms Dorothy Akwero, the clinical officer at Palabek-Gem, on Friday said: “Their (adults) behaviours are exactly for children and all the signs and symptoms exhibited have no difference to those of children. We are now worried that the disease could be changing its mode.”

Ms Akwero made the remarks while receiving 100 mattresses for the disease’s victims donated by Tian-Tang Group, a Chinese company.

The district’s focal person for the disease, Michael Odope, said although the symptoms and signs among adults are similar to affected children, more investigations need to still be carried out to verify the cases.

Lamwo district chairperson, Mr Mathew Akia, said the new development could worsen the situation. “Who will direct the children to the treatment centres, if their parents and guardians have also become victims?” Mr Akia asked.

Although several efforts have been put in place to find the mode of transmission and treatment for the disease by the Health Ministry and other partners, no tangible have been observed.

By Cissy Makumbi  (email the author)

Posted  Tuesday, May 15  2012 at  00:00

Acholi MPs want Parliament to vote on nodding disease today

Opposition MPs from Acholi want the motion declaring their sub-region a humanitarian disaster area finalised today and voted on by show of hands.

However, according to today’s order paper, prepared yesterday, the motion continues and voting could take place if the House realises the quorum. The motion was not concluded last week because of lack of quorum after scores of NRM MPs walked out of Parliament before voting.

At least 125 MPs are needed to realise the quorum. MPs Beatrice Anywar (Kitgum Woman, FDC) and Gilbert Oulanyah (Kilak, Indep.) yesterday accused Acholi MPs from NRM and some members of Cabinet from the same region of sabotaging the move.

The duo named Minister of Foreign Affairs Okello Oryem, MPs Amos Okot (Agago, NRM) and Lowila Oketayot (Pader, NRM) as those who vacated the House. “We saw our colleagues on the NRM side weren’t comfortable to accept that we declare our area a disaster and that is very unfortunate. Probably they didn’t want to been as supporting it,” Ms Anywar said. She added that voting should be done by show of hands so that everyone sees which Acholi does not support their electorate.

Mr Oryem was not available for comment but Ms Otekayot said the new team of MPs from Acholi has been more vibrant in caring for their people than Ms Anywar whom she said is playing to the gallery. “I care more for the nodding disease patients than her because the problem was there years ago when she was in Parliament. She is playing on our sweat because when we came to Parliament we raised the issues with government, where was she all along?” Ms Otekayot said.

Mr Okot told this newspaper that he had rushed to attend a budget workshop when he left the House. “I shouldn’t be judged like that because I can’t be influenced. It’s the work of the new MPs that Ms Anywar has hijacked and now is blaming us- which isn’t fair,” Mr Okot said.

The prayers of the motion were that government declares the area a disaster, release and make public the Centre for Disease Control (CDC) report, and that the social services committee of Parliament takes charge and reports to the House quarterly among others.

According to Mr Oulanyah, until yesterday morning when he left his village, the number of affected children was 7,200 compared to 5,000 declared by World Health Organisation declared almost a week ago.

The syndrome has been pronounced in Pader, Kitgum, Lamwo, Amuru and Agago districts.
Health ministry officials have initially said CDC, based in Atlanta, released partial results from their three-year study of the disease, associating the syndrome with river blindness which is transmitted by bites of the black river fly.

By Sheila Naturinda  (email the author)

Posted  Tuesday, May 15  2012 at  00:00

Pader women decry slow pace of tackling nodding disease

A group of women in Bolo- Kwera village, Awere Sub County in Northern Uganda, have urged the government to assist them in eradicating the nodding disease which is affecting children in Awere Sub county, Northern Uganda.

The women, who gathered at the resident of Opio Pierro, decried the slow pace at which nodding disease was being addressed in the area.

Pila Adong, a resident in the area, said: “There are over 1,000 children with nodding disease in the area of Awere Sub county. Most of these also come from poor families and live in poor hygiene”

Mzee Luke Orach, another resident said: “There is only one medical assistant who serves the population in Bolo Village at the health centre II located in the area. All other women and people with complaints of ailment have to travel to Awere Health centre III.”

There is also a severe challenge in getting water. There is only one borehole in Bolo, located at Bolo- Primary school, which serves the whole village. The other borehole located in Awere is not accessible.

The vast majority of homesteads in Bolo Kwera do not have toilet facilities for proper faecal disposal such as latrines. When a village member was asked where one could get a toilet facility, he was told to move ahead in the bushes of the area.

Such a failure to provide faecal disposal units could be a cause of diseases such as diarrhoea and worms.

April 16, 2012 Submitted by kityojames

Last group of nodding disease children discharged

The last group of children suffering from nodding disease has been discharged from Mulago national referral hospital.

“They are expected to report to the treatment centres for follow up documents before returning to their homes,” the hospital’s spokesperson Dan Kimosho said.

The hospital will continue to work closely with the ministry of health to monitor the affected children but from the established centres.

One of the children who had a problem of brain trauma underwent a successful operation, Kimosho confirmed.

Before this last group, Mulago had discharged about 20 children who were suffering from the same disease.

The screening and treatment centres are in Kitgum, Pader and the other affected districts.

Nodding disease is believed to be a new type of disorder characterized by head-nodding episodes that consist of the repetitive dropping forward of the head.

So far over 3000 children, mainly boys between the ages of five and 15 have been affected with 170 reported dead. The germ which causes river blindness also causes epilepsy in children.

According to research by the World health Organization (WHO) the affected region lies within an area where river blindness is prevalent.

By Violet Nabatanzi

Nodding disease spreads to Gulu

Whereas government last week officially opened nodding disease syndrome reception centres in Pader, Kitgum and Lamwo districts, the disease, whose cause and treatment is yet to be established, has reportedly spread to Gulu District.


The Ministry of Health and the World Health Organisation (WHO), have confirmed the development with the latter warning government to be cautious in its response to diseases.

Speaking at the opening of the nodding disease screening and treatment centre in Kitgum District on Friday, the WHO resident representative in Uganda, Dr Joaquim Saweka, warned that government should also address treatment and management of HIV/Aids and malaria.

He said the nodding disease syndrome is not unique to Uganda and is no longer a public health issue in Tanzania and South Sudan where it was reported earlier.

Dr Saweka said WHO is currently investigating the link between nodding disease and onchocerciasis, a parasitic condition that can cause river blindness, which has so far been linked to the disease.

“We have now arrived at an observation that places which suffer from nodding disease have high concentrations of onchocerciasis but we cannot decisively conclude that this is the parasite causing the nodding syndrome,” adding that WHO had been treating the disease as a post-traumatic stress disorder.

“If we are advocating resources, let’s not use nodding disease as an entry point because if all health centres are functional, the facilities can handle all health problems,” the WHO representative said.

Gulu Woman MP Betty Aol Ochan said last week that 100 cases of the disease were reported in Palaro Parish, Odek Sub-county in Gulu District, with another 45 reported in Paicho Parish.

Nodding patients
Meanwhile, the health ministry has so far screened 795 nodding disease patients. Thirteen are admitted to Atanga Health Centre II while 46 are admitted to Kitgum Hospital.

According to the national response coordinator, Dr Bernard Opar, the number could be less than what is on the ground but government has allocated us four motor vehicles.

“The 795 cases are those with the nodding disease syndrome and epilepsy. We also have cases of malnutrition but we hope to cover the entire districts and compare the statistics with those provided,” said Dr Opar, adding that the most affected areas are those surrounding River Agago and river Aswa in Pader District.

By Stephen Otage  (email the author) Posted  Tuesday, March 27  2012 at  00:00

Censorship ahead of the IPU assembly in Kampala: On Nodding Disease

In the next few days Uganda will host the 126th Inter-Parliamentary Union (IPU) assemby. The IPU assembly brings over 3000 delegates to Kampala. This assembly will discuss issues on (good) governance and maternal health among other pressing issues.

Apparently some of the delegates have already started arriving in Uganda and some of them are staying at the Serena Hotel in Kampala.

One of the key issues in Uganda at the moment is the Nodding Disease. Because the government is not very responsive in terms of supporting the victims of this mysterious disease, the civil society decided to take a very active role not only to lobby the government but also to support the victims.

The women’s movement in partnership with the NGO Forum in Uganda have organized two fundraisers for the nodding disease victims over the past 2 weeks. One of the fundraisers was held at Sheraton Hotel on Women’s day while the other was at the Kyadondo Rugby Grounds.

Because the fundraisers are for a good cause, Pragmo Jazz Band wanted to contribute to the efforts; to bring relief to the nodding disease children so they invited the women’s movement to conduct a fundraiser at their show at Serena hotel tonight (Tuesday, March 27, 2012).

At 7.45Pm this evening Emmanuel an Office Assistant at NGO Forum was impounded at Serena Hotel main gate by men in Police uniforms. Before his arrest, Emmanuel had come to Serena Hotel to deliver a banner, pictures of nodding disease victims used for fundraising and an empty fundraising box with writings “Please Donate to Keep a Nodding Child Warm”. This is the same material that this women’s group uses for the fundraiser.

After searching him (Emmanuel), the police men asked why he had showed up at Serena with pictures of the nodding disease victims. He explained that he was only there to deliver the material for a fundraiser. Then the policeman asked him whether he didn’t know that the IPU delegates had already started arriving in the country and that some of the delegates were actually staying at Serena Hotel. “Let them (the IPU delegates) read from the newspapers if they really want to find them but don’t go displaying the picture” the policeman said.

Apparently the management of Pregmo Jazz Band informed the manager Serena Hotel of this incident hoping that he could help. The manager tried to get through to security but there was not much for him to do. Following Emmanuel’s arrest the Band has been prohibited from mentioning anything to do with the Nodding Disease fundraiser during their show.

Allen a lawyer from FIDA together with colleagues have tried to talk to the DPC and other officers in charge at Central Police Station but they have refused to release Emmanuel.

Upon arrival at the Central Police Stationk, Emmanuel was charged with “Criminal Trespass”.

It is quite funny how things work in the government; this is censorship of the highest degree. But what is left to censor of the nodding disease? Over 3000 children have been diagnosed with the disease and over 200 deaths have been reported. The syndrome has come to light which is why our government should stop hiding it from the public and rather take a bold step to address it.

I know that this disease will be an embarrassment to the government of Uganda in front of the IPU delegates. It is only embarrassing because for over a decade the government of Uganda knew that the disease exists but they did the same thing they are doing now – hiding the disease instead of addressing it.

Four hours after the arrest (at 11:45pm) Emmanuel was released following an order from the Inspector General of Police Kale Kayihura. Even though all the charges have been dropped, the pictures and other fundraising material remains in police custody.

“Ok if there was a mistake we are sorry about it. Dont be political do your work you are civil society organisations” Uganda Police IGP Kale Kayihura told the representatives from the women’s movement who were lobbying for the release of Emmanuel after releasing him.

Museveni wants compulsory nodding disease treatment

President Museveni has called for the compulsory taking of river blindness drugs to fight the nodding disease syndrome. Speaking during the launch of a treatment centre for the disease syndrome at Lacekocot in Atanga Sub-county, Pader District, at the weekend, the President said he will camp in Acholi sub-region to command the exercise.

The President said he would defeat the nodding disease syndrome just as he did with the elusive LRA leader Joseph Kony. “All of you must prepare to take drugs when I return to command war against it in next financial year. We will defeat the disease,” he said.

Mr Museveni added that he was informed that children diagnosed with the disease had onchocerciasis (river blindness) worms. The president also promised to give food and financial support to parents of children suffering from the disease.

The Pader Woman MP, Ms Lowila Oketayot, said some parents were committing suicide due to the disease and poverty. “The suicide is not about lawlessness, it’s because they are poor and burdened by this disease. Many will still continue to die if no urgent solution is rendered to them,” she said.

The officer in-charge of Atanga Health Centre III, Mr Denis Nockrach, said they were overwhelmed by the high number of patients. “The last two weeks we received 596 children, 414 were diagnosed with nodding disease and the remaining ones had epilepsy,” Mr Nockrach said.

He said they have changed the treatment from cabomazipine oral solution to sodium valporate, which has shown improvement because it contained fortified food element. The Principal Medical Officer in the Ministry of Health, Dr Bernard Opar, told Daily Monitor that they were not sure whether the nodding disease kills children.

“They may be dying of different thing like starvation and it’s still subject to research. We are committed to investigating,” Dr Opar said. Many parents of the children suffering from the nodding disease syndrome have expressed pessimism over the ability of the health facilities to treat their children.

Ms Christine Adyero, the mother of a child suffering from the nodding disease syndrome, said the health centre was not providing food and clean water for their children.

By Sam Lawino  (email the author)
Posted  Monday, March 26  2012 at  00:00


Nodding disease victim sees light at end of tunnel

Nearly two months ago when I set my sights on Nancy Lamwaka, she looked fragile as the Nodding Disease Syndrome kept her captive (See Nodding HORROR: 12-year-old victim is tied to a tree for 13 hours everyday).

Tethered to a tree trunk for close to 13 hours, Nancy by all measures lived an inhumane life. Lamwaka is a victim of a disease that has so far defeated all health institutions of the world, including the famed Centres for Disease Control and Prevention (CDC) of the United States.

Approximately 3,000 children are affected while a few hundred have died. With the violent nodding and seizures, desperate parents prescribe virtually anything in a bid to help their children. Nancy’s father, Frank Odongokara, sought solace in the rope he used to tether his daughter but he never at one point lost hope.

Today, Nancy has registered some progress. My first impression on seeing her, on my recent second visit was her appetite. It had remarkably improved. Seated in a neat circle of siblings, she opened groundnut shells and easily ate the seeds without getting attacked by the nodding syndrome. Nancy can now walk freely under the close watch of an adult. Fingers that were once rotting are slowly healing. Her previously pale skin is also getting smooth.

Nancy’s aggressive use of sign language has also impressed her parents. She stands next to a pot if she needs drinking water, and stretches her hand for food whenever hungry.

“There is some improvement from the time Medical Team International came with some drugs for her. The doctors have been giving us a variety of drugs (tablets) to experiment.

Depending on which one works, we are going to continue like that,” said Odongkara.

“She’s still attacked by the nodding syndrome. She does not miss a day but the impact is no longer as serious as it used to be. Today, the nods may be twice a day as opposed to about 10 times [in the past],” Odongkara revealed whilst seated under the tree his daughter used to be tethered to.

Just like her husband, Grace Akumu, is happy to see positive changes in her daughter’s outlook. Akumu, however, does not want to be carried away as long as the definite cure remains a mystery.

“It really feels good to see my daughter improve, but her mental status continues to worry me. She still cannot talk, rarely responds to orders, cannot do anything constructive, and always looks disturbed. That’s why I still tie her whenever I am leaving her alone home,” Akumu said.

Part of Nancy’s progress is a result of the ministry of Health opening up three Nodding Disease treatment and screening centres in the northern Ugandan districts of Kitgum, Pader and Lamwo.

Support Nodding Disease victims; the most urgent challenge to a northern Uganda child

Over the last few days I have received thousands of emails in response to the video I put out in response to KONY2012. Most of the emails were from grateful people who had learnt something from my video.  I am unable to read all the responses and reply you all at this time but your efforts are very much appreciated. Most responses indicated they want to support the Ugandan child and be sure that the help goes to the right cause.

The cause

More than 3000 children in northern Uganda are currently battling a mysterious disease that has come to be known as nodding disease. Please read more from Wikipedia about Nodding Disease. There are so far 170 reported deaths. In brief,  nodding disease is a mentally and physically disabling disease that only affects children between the ages of 5 and 15. Victims get seizures on the smell of food or when they get cold. Read more from previous blog The World Health Organisation and Centre for Disease Control (CDC) have been working on research to establish the cause and how the disease is transmitted with no success so far.

Why we need to act fast:

With the healthcare system in northern Uganda wrecked by war and in a country where the right to healthcare is not guaranteed, most children suffering from this disease have been going through unbearable suffering. Parents are forced to painfully tie their children to trees. I visited the Mulago National referral Hospital last week as part of women’s group to give a small hand to the caretakers of 25 children who were brought from northern Uganda to Kampala.

Women activists in Uganda this week tied themselves to trees to protest government slow response and the continued psychological torture mothers in northern Uganda are going through despite end of the war. The government has not yet released the 7 billion shillings needed to support the victims and families.

How to act:

Northern Uganda has great leaders who have been campaigning to get more funds and medical attention to the victims. Beatrice Anywar, the Woman Member of Parliament for Kitgum is one of the finest. She’s not just a politician; the whole of Uganda knows her activism on corruption and environmental issues. Last year,  the US Mission in Uganda gave her the Woman of Courage Award for her work. Anywar has been on radios and TVs calling for donations to help victims. I spoke to her this morning via phone from Kitgum in northern Uganda where she is meeting grassroots leaders, community health teams to look for ways to deal with those suffering from the disease. More than 3000 children cannot go to school or access the available medical help to ease their suffering. If you want to donate to a cause and help out in reconstructing northern Uganda and bringing communities back to their feet please support Anywar and others battling nodding disease.

Contact MP Beatrice Anywar for more:  Phone: +256 772 99 87 24 Email: Visit her on Facebook and leave her a message:  Beatrice Atim

More images from the north on Echwalu’s Blog and a story of a tormented girl victim of nodding disease. Hashtag #NoddingDisease to raise awareness.

Rosebell Kagumire-