The mystery of Nodding Syndrome carries on.

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Village Health Team (VHTs) Carry aside a nodding syndrome client at Bolo Health Centre II in Pader district after having a seizure attack during a meeting with Acholi Parliamentary Group Members of Parliament on Moday.

Pader-Uganda: Over 3,000 children have been affected by Nodding syndromein Northern Uganda; with an estimated case fatality of 6.7%. Nodding syndrome (NS) is a neurological condition with unknown etiology.

It is characterized in its early course by repetitive forward dropping of the head often in association with feeding and cold weather, and later by epileptiform seizures, neurological and cognitive decline and stunted growth.

Last Week, Legislators from Acholi Parliamentary Group toured the affected communities to assess the current situation of Nodding Syndrome patients in the districts of Omoro, Pader and Kitgum.

The first cases of Nodding syndromewere reported in 1997 in Internally Displaced People’s (Concentration) camps in Kitgum district; however, response efforts by the Ministry of Health and partners towards understanding the disorder and establish management only commenced in 2009.

Last week, Health Minister Jane Ruth Aceng was reported in the media saying “there is no nodding disease crisis” in Northern Uganda.

Meanwhile, legislators in the region disagree to her statement saying a cause to the sickness has to be found so that patients get proper treatment.

“I believe that the medical doctors know the cause of the syndrome because you cannot stay with a disease for more than 10 years without knowing it” Kitgum Member of Parliament Okin PP Ojara lamented.

In 2008 and 2009, cases were reported from Kitgum, Lamwo and Pader Districts in northern Uganda.

Whereas other cases exist in the new Omoro district, there is no clear community survey by government of Uganda to determine the current burden of Nodding Syndrome in the affected districts.

 “It is still a syndrome, not a disease because it has no clear treatment,” a statement by Kitgum General Hospital Superintendent, Geffrey Akena alludes further to a sickness that has faded lives and drowned hopes of Children in Northern Uganda for over 13 years.

The children aged 5-15 depend on three drugs to survive despite continued seizure. They mainly take sodium valproate and carbamazepine tablets supplied by National Medical Stores, to health facilities nearest to them. In situations where a child fails to take their medication, they relapse, according to Richard Otto, one of the trained Village Health Team (VHT) in Awere Sub County, Pader district. VHTs manage coordination of nodding syndrome clients with medics at community levels.

Otto says the children have been subjected to treatment that most are not responding to. He adds that most of the children have grown into adults while others have been abused as children.  

He adds that 10 girls with nodding syndrome have in 3 years been defiled and their condition make them more vulnerable during pregnancy.

“The pregnant ones, some are here, are not safe because the seizure can injure them and we fear these might bring complications for the client on treatment. Some have been neglected as people who cannot help.”

Despite isolation, discrimination and the difficulties that most parents associate with caring for nodding syndrome children, 50-year-old Doreen Akongo can never leave her 18-year-old daughter Alice Akello to suffer alone.

Akello is 7 months pregnant. She got nodding syndrome in 2006 when her mother was internally displaced by the LRA war at Awere Camp in Pader district. On returning to their ancestral home in Bolo Lamac village in Awere Sub County in 2008, her eldest daughter, Akello became a target by abusers who never sympathized with her vulnerability.

“I do not leave her alone at home. But sometimes, I have to go to the garden or market, so I leave her with her other siblings at home.” Akongo says.

However, she was disappointed when an unknown man waylaid and raped Akello as she wondered in the village. It is common among nodding syndrome clients to wonder whenever unattended to.

“I suspect that someone might have abused her as she wondered in the community. Now she is pregnant and I don’t know how she will push the baby. Just look at her. Right now she cannot think or talk like a human being.” Akongo told our reporter as she wiped tears rolling down her chin.

To address such miseries of Nodding Syndrome, government of Uganda designed key strategies in response to the epidemic including formation of a national and district task forces, development of training manual on Nodding Syndrome and training of primary healthcare professionals on case diagnosis and clinical management.

However, few of the key strategies have been effectively implemented.

At Bolo Health Centre II in Pader district, Akello had a 15 minutes seizure. The Health Centre gives drugs to the clients where the acting in charge is a nursing assistant, Edwin Okello, new to the sickness.

“Nodding syndrome is still new to me. I missed that training on handling nodding syndrome. They were training only in-charges where I was working. I am only familiar with Epilepsy.” Says Okello.

Okello is left to manage the Health Centre and about 30 nodding clients daily until his senior, the in-charge James Awany, enrolled nurse returns from his one month leave.

Okello is at times left with no option but to refer the clients for their treatment to Awere Health Centre III in Omoro district, about 8kms away.

Omoro district statistics show that 18 patients have died since 2012 while 254 children in Odek Sub County still have nodding Syndrome. The children mainly get their treatment from Awere HCIII.

At Awere Health Centre III, 18 year old Lucky Aromo awaits her turn to be attended to by a doctor. Aromo is an orphan from Lalar Village, Binya Parish, Odek Sub County in Omoro district.

Aromo is 8 months pregnant with her second child. She gave birth to her first child at 14 years. She was lured by a known man in her village on market day in 2014.  Her mother refused to let the father of the child take responsibility for fear that he might manipulate her because of her condition.

When Aromo conceived again with the second child, her mother rejected her and the pregnancy. Aromo now lives with her elderly grandmother in the village.

Aromo worries how she will give birth without the support of her mother since her seizure is still frequent despite obediently taking her medication.

“The father of my child promised to help me but my mother rejected him. He had promised to marry me but now, he rejects me too. He thinks he will be arrested and imprisoned because of me.” Says Aromo as she fidgets with her fingers, head dropping on her shoulder.

These are common scenarios in villages where children with Nodding Syndrome hail from.

Charles Oyoo Adot, the Local Council III chairman of Labongo Akwang Sub County in Kitgum district told our reporter that his area has become a study tour zone as many children suffer without consistent support to those affected and their families.

“378 households are affected here with 463 children having Luc Luc (Nodding Syndrome). Our children continue to suffer with no clear explanation as to what is causing this disease. The children are on medication but there is no food to feed them well.” Says the LCIII chairman.

58 children have so far died of Nodding Syndrome in this sub county while two others who wondered off, have never been recovered. Adot says the children always wonder looking for what to eat since the medication they are on is strong.

According to World Health Organisation, Nodding syndrome was first documented in the United Republic of Tanzania in the 1960s, then later in the Republic of South Sudan in the 1990s and in northern Uganda in 2007.

Several research initiatives have been instituted and implemented by institutions including the Centers for Diseases Control and Prevention (CDC), World Health Organization (WHO), Gulu University, Makerere University, Ministry Of Health, Mulago and Butabika national referral hospitals on various aspects of NS. These studies have included search for the etiology and risk factors, community beliefs and knowledge, clinical presentations and staging of NS and nutritional assessments.

Despite numerous and extensive investigations in all three countries, very little is known about the cause of the disease.

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