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: anywarb@yahoo.co.uk 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- http://rosebellkagumire.com/2012/03/10/support-nodding-disease-victims-the-most-urgent-challenge-to-a-northern-uganda-child/

Women tie themselves to trees over nodding disease

Women activists tied themselves on trees for 30 minutes yesterday to show solidarity with mothers whose children are suffering from nodding disease syndrome. The women expressed concern for their colleagues in Acholi Sub-region, condemning government’s failure to quickly address the nodding disease problem. They said mothers in northern Uganda are suffering psychologically because of having to tie their sick children to trees to save them from injury when they fall. “It is not acceptable for any parent to think that the only option left to save their children is by tying them to trees when they have a government whose mandate is to ensure that the citizens exercise their right to good health and access to medical attention wherever and whenever necessary,” said Ms Jackline Asiimwe, a women rights activist. With sisal ropes around their bodies, about 50 women helped each other tie themselves to trees at the NGO Forum offices in Kampala. They observed moment of silence and prayed for the deceased children.

National problem; They asked the government to address the issue as a national problem and not a northern Uganda issue. Placards reading: “Women in the north are also mothers, save the future of Acholi now”, together with photos of the some of the victims tied to trees were displayed by the women. The Kitgum Woman Member of Parliament, Ms Beatrice Anywar, said nodding disease is a sign of a failed service delivery. “When there was a foot and mouth disease outbreak in western Uganda, Parliament was called from recess, a supplementary budget passed and the area declared a disaster, why can’t they do the same for people? Unless cows in western Uganda are more important than people in Acholi!” Ms Anywar said.


By AGATHA AYEBAZIBWE   (email the author)

Posted  Thursday, March 8  2012 at  00:00