“A FACT FINDING ON NODDING DISEASE IN OKIDI AND AKWANG SUB-COUNTY KITGUM DISTRICT”

Background of the disease:

A disease only known by many as “Nodding disease” was first reported by the Acholi parliamentary group to parliament to the then Minister of Health in 2004. However it was not called the nodding disease, it was referred to as the “strange disease”. It has since emerged that the report on the strange disease reached to the Ministry of health in 2009 according to the current Director General Health Services Dr. Jane Achieng.

The cultural belief on the causes of the diseases:

• Witch craft and evil spirit
• Relief food that had pieces of broken bottles and the chemically treated beans meant for agriculture that people ate due to hunger
• Bombs used during the war
• Epilepsy
• Dirty water from the wells/springs and bites from Black flies (mostly found along the water/river banks)
• Trauma due to the war
• Eating of the Bush meat.

 All in all the signs and symptoms are observed when a child is given food to eat, although the child is angry, s/he does not realise the taste of food and seizures. Health workers believe that the disease affects the brain and destroys the sense of taste and feeling. Different agencies have intervened but the possible causes of the disease have not yet been established by either the Ministry of health or the world health organisations and other development partners.

The Purpose of the Finding:

To find out the socio-cultural and economic impact of nodding disease on the population, especially children and women, in kitgum district and how much the local government and the central government is doing on the ground to help the affected families.

Secondly the Fylaa Alumni to get valuable information about nodding disease that shall help in advocating for government interventions to manage the disease nationally.

Research Findings:

The team found out that the disease has greatly impacted on the socio-economic lives of both the women and the children compared to the men.

For the children; those attending schools are being isolated and stigmatised by fellow pupils in school. Since the non-affected children do not want to sit or socialise with these children suffering from the “unknown disease.” To further show that this as happening, the deputy Head teacher of a primary school in Okidi Parish, Amida Sub County Kitgum District says, “when these children suffering from the disease get the attack, they are not helped by fellow pupils in class, those not suffering from the disease simply run away.”

Some of the affected children suffering from the “nodding disease” are dropping out of school due to frequent attacks and unfriendly treatment by fellow school going children.

Below is the detailed data from Okidi Primary School. (Statistics of pupils with the syndrome in the school)

Year	No. registered	No. dropped out	Drop out Percentage
2007	63	15	24%
2008	72	35	49%
2009	94	41	44%
2010	50	20	40%
2011	86	30	35%
Total:	365	141	39%

These statistics were got from one primary school of the affected sub counties. However in all the affected sub counties there were reports of incidences of school going children dropping out.

They are also being neglected by their parents who sometimes leave them un-attended to when they get the attacks because they believe the children are going to die since there is no known cure for the disease.

The parents are also being traumatized by the diseases to an extent whereby they are forced to tie their children on poles of the huts or trees to enable them to do garden work. They however argue that this is the only way they can guarantee safety of their children from fire-burns, drowning into open water sources (dug-out wells) and other forms of accidents when they are out there in the gardens.

The children feel inferior especially at school due to eventual loss of memory, thus, poor performance at school. In their communities, the children are always isolated due to continuous flow of saliva from the mouth, wounds from injuries sustained during the seizures.

The state of the victims’ mental ability and physical ability makes them prone to attaining injuries death. This is backed by the fact that some of the children do run away from home when attacked and can easily end up in springs, fire places and, might fall in and die if not saved /followed by parents.

The victims are malnourished. This is because these children are unable to feed because they are mostly attacked when they see food.

The victims suffer drastically stunted growth where even those who have reached their youth still look infants.

The women do not have time to socialize with each other since they have to always be there to watch out for these sick children.

Domestic violence is being manifested in houses that have the case of this disease. Some parents segregate the sick children and there are quarrels every now and then on the women by the husbands and fathers of these children.

There are marriage / family breakups citing incidents in which the husbands have abandoned their wives to take care of the children and every household responsibility in caring for these children.

Loss of family relationships between relatives of the affected families who live in non affected areas and those in the affected areas as those who are in non-affected areas refuse to associate or be associated with their relatives in the affected areas.

Psychological torture is also being experienced by parents of the affected children and the children as well. The children feel like they are forced / caused to have the disease as a punishment and the fact that none of affected children their status. This is further evidenced when a sick child was wheel borrowed into want to touch the child but rather asked the mother to carry down the children from the wheel burrow.

The economic productivity is crippled in the households and community as a whole. Parents in the affected households have limited time to walk away from home to gardens to work because the affected children are at a risk of getting terribly injured or even die should they get an attack and are not watched closely / offered any help; most of them have had their senses disabled by the disease. The families are therefore impoverished since they cannot engage fully at work to earn income in their households.

There is massive food insecurity in the households and community in the affected area. The women are severely overwhelmed when labouring to look for food for families. This is because the households cannot engage in agriculture and other productive activities away from home as they fear the victims would be at risk of accidents in case of an attack.

The household are observed to lack basic needs such as clothing, food, water and healthcare. Most of these victims were found naked, they looked malnourished and they scramble at food whenever they saw food but yet they were disabled to eat due to disease attacks.

Most of them were reported to have stayed for quite long without medical support.

The “nearby” health facilities could be about 15 kilometres from most of them, with no ambulances (bicycles, cars, motorcycles etc) save for improvised wheelbarrows and, drugs used to treat them were reported to have gone out of stock. Hence, the mothers suffer psychological trauma seeing their children wrestle with disease when the seizures occurred.

The impact on the culture:
The culture of social responsibility in the respective affected families and the community as a whole is lost. There is spirit of brotherhood in the Acholi society. The culture of sharing burdens and belongings and caring for one another, looking after relatives’ children is a common culture. All these are not in order within the affected community because everyone is first of all vulnerable and the fear that this disease can transmit to one another.

The cultural continuity is then questionable in the affected families. In Acholi society, children are important for tribal, clan and cultural continuity. They inherit power and venerate the culture. But the disease affects children leaving them with no hope of cure. For families in which all or most children are affected means the future for such families has gone in complete doubt, hence, culture is seen to be doomed.

The cultural rites performed in Acholi yields hope and belief. There were traditional rites performed to cleanse the spirit to avert disasters but seemingly without effect hence the communities are in the verge of losing hope in cultural rites.

Interventions by Government:
The local government in Kitgum was found to have taken some interventions. They outreach activities by sending some Village Health Teams to help provide first aid roles and also identification of victims. They also help to distribute drugs to the victims.

Central government through the Ministry of Health intervened with a lot of investigative research. In 2011, they took some 5 sample victims to Mulago National Referral Hospital for further investigations but at all the endeavours are so far in vain.

The ministry in the recent days was reported to have visited the sites in the company of State Minister for Health to assess the situations. They promised to train some Village Health Teams to help in managing the disease, train teachers in Special needs Education to handle these victims in schools and some counsellors to provide sufficient outreach services in the areas affected.

They also provide treatment centre nearby the victims’ villages.

Some non-governmental organizations (NGOs) were found having interventions. Trans-cultural Psychosocial Organization (TPO) was found providing counselling and treatment services to victims and their caregivers.

Interventions by the Community Members:
Besides the interventions carried out by the local government in kitgum district, the people in the community have also tried out some interventions that they believed could help solve the problem,

• Some traditional herbs were administered to treat the victims.
• One of the caregivers reported to have separated the victimised children from the healthy ones in order to avoid transmission.
• Some admitted that they performed traditional rituals to cleanse the sick and appease the spirits to adorn the sick.
• Some admitted that they controlled the victims from going to risky places such as open water sources in order to prevent them from drowning, while collecting firewood and when in the gardens.
• Others resorted to confining them to areas expected to save them like tying them with ropes (on trees) so that they don’t go to risky places when the caregivers are out of sight for other activities

Recommendations by the Community:

Despite numerous attempts by the community to help reduce on the challenges encountered by the disease, they have also listed what they believe that when established shall be helpful to their conditions and the community at large:-

1. The communities advocated for more and particularly traditional rituals to cleanse the victims.
2. Special treatment centres be established in order to manage the disease.
3. Safe water sources be provided while the current water sources are investigated for a connection with the origin of the disease.
4. Special needs schools be established.
5. More drugs especially those that have a positive reactions towards the victims, be provided / supplied since the drugs that have been recommended and have been given to the victims seems not to be working.
6. More research should be conducted to diagnose the disease.
7. Improve nutrition of the victims.

Recommendations: 

1. There is need for more research and documentation of the findings for effective treatment and management of the disease.
2. Health workers, counsellors and village health teams should be trained particularly to manage the disease.
3. There is need to support the household with food security in the affected area in the form of supporting agriculture, distribution of seeds and garden equipments.
4. Manage malnutrition in victims by supplementary feedings.
5. Some psychosocial centres be established in the vicinities of the victim communities for home outreach services.
6. The communities seems to be not well informed of the different support and interventions from Non Governmental Organisations that were helping them there is need to Educate them on this.

Acknowledgement:
We would like to convey our sincere gratitude to the following persons, organisations for if it was not because of their contributions, the reports would have not been realised, we once again thank you for that.

1. Miss FOWODE, Ms Deborah Auma. For providing the financial support to enable the team members meet the financial demands while collecting and compiling the findings.
2. As the team leader (Komakech Richard Jomeo), I would like to thank also the team members, Toolit Simon (FYLAA, KYU), Aloyo Irene, Oneka Brian and Atim Irene for their cooperation, dedication, commitment, and sense of maturity exhibited during the findings and compilation of the findings to the point of sacrificing both life and time for the people of Uganda.

More appreciation is extended to other community leaders that the group interacted with including but not limited to the following:

• Local councillors (LC3 Amida (FOWODE Trainee on community outreach), Deputy Head Teacher of Okidi P/s, District Vector Control Officer of Kitgum district.
• Parents of the children infected and elders.
• Members present at the joint council meeting with the area councillors and all partners in the struggle to find the cause of the disease.
• District area councillors, chairpersons of Acholi, Lamwo (Hon. Akia mathew), kitgum (Dr. Nyeko Luuka), MPs of Acholi Parliamentary group (Hon. Betty Aol Ochan (GULU woman MP), Hon. Okot Amos (Agago district), Hon. Oulanya Gilbert (Kilak county), Hon. Reagan Okumu (chairperson Acholi parliamentary group)), Kitgum District Vector Control Officer (Dr. Komakech John Bosco), Kitgum District Health Officer (Dr. Olwedo Alex).

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