Nodding syndrome health care support

Nodding syndrome is an epidemic in Northern Uganda affecting a substantial portion of the rural communities. It appeared in the 1990s during the decade long LRA war that disrupted the socio, economic, cultural and health structures in the Acholi and Lango regions. Nodding syndrome is characterised by repetitive head nodding, seizures and retarded growth in children between 5 – 16 years of age and has affected over 5000 children in Northern Uganda. A cure to nodding syndrome is not yet discovered but the disease has been associated to onchocerciasis which has increased the relevance of onchocerciasis control. The socio-political history of Northern Uganda has been marred by LRA war, which made in difficult in establishing early preventive and treatment interventions for Nodding syndrome. The politicization of the diseases and war has led to mistrust in the government by the locals, affected research and dissemination of knowledge necessary for preventing and control of Nodding syndrome and onchocerciasis in Northern Uganda. This has exposed the children from Northern Uganda to Nodding syndrome disease resulting into destruction of the next generation, sinking their communities deeper into poverty and poor extension.

Northern Uganda is the second poorest region in Uganda, with the rural communities engaged in subsistence farming with low returns limiting their ability to access better health care and nutritious food diets. Through our Nodding syndrome heath care support initiative, a well-stocked community clinic will be setup in partnership with MARO Clinic, to train village health teams (VHT) on available medication, nutritional and musculoskeletal physiotherapy for children suffering from the Nodding syndrome. The trained VHTs will offer a range health care support and distribute drugs to Nodding syndrome victims within our target communities. A patient database system will be established to monitor the patients so as to ensure their recovery and ability to live a better life. Access to good a nutritional diet is vital for the recovery of Nodding syndrome victims besides the medication and physiotherapy.  We shall initiate food security intervention that is aimed at support already existing community agricultural value chain. This will boost their farm production and guarantee consistent supply of quality food. The increased food production will contribute to household food security, improved nutritional intake and increased incomes generated from the sell of surplus farm harvest, hence access to better heath care and support for their sick children and reduction of the occurrences of Nodding syndrome. 

Nodding syndrome affects the normal growth and development of the affected victims. Therefore, our health care support will enable families and their children have nutritional diets intake and stimulate normal physiological function of the body by equipping rural VHTs with adequate knowledge and skills in nutritional diets and physiotherapy treatments for Nodding diseases affected children.

As part of Nodding syndrome heath care support aimed at improving the lives of families and children suffering from Nodding syndrome, we have signed and M.O.U with MARO Clinic to improve access to better health care for families living with Nodding syndrome in the rural communities of Northern Uganda. 

Therefore, we are offering the young generation from the rural communities of Northern Uganda an opportunity to have normal human development and growth stages in life, enabling them sustainability contribute towards the development of their families and communities at large.

80% of our team is made up of individuals hailing from Northern Uganda, who speak the local language and have worked in the region. Our team members have professionals background and wealth of experience in medical, human nutritional and agricultural sectors. As a team, we have a combined work experiences of over 50 years while working under similar project interventions in different rural communities in the North, West, East and Mid- North region of Uganda. 

Our passion to contribute towards improving the livelihood of Nodding syndrome begun from our contact with neglected and depressed Nodding syndrome children while promoting commercial maize and soybean production for food security and household incomes in the rural communities of Gulu district. From our short engagement with the families affected by the Nodding syndrome, poor nutrition intake, poor health care support and lack of money were the main issues affecting these families. This information has been used to guide the design of our initiatives with focused placed on using the Village Health Team approach to provide these families with quality health and mental support while our agronomists tap into opportunities for transforming their farms into commercial entities that will generate money essential for meeting their basic needs; health care, nutritious food, good shelter and quality education. 

Our team is made up of Staffs from Lucretia Agri-Organization, MARO clinic, VHTs and representatives from Nodding Syndrome affected families. This will enable us to capture the community input and integrate with expert input to deliver a project that has lasting impact on the lives of its beneficiaries and the rural communities in Northern Uganda.

The Horizon prize will enhance our financial capacity, enabling us to operationalize the Nodding syndrome heath care support initiatives in the rural communities of Gulu district.  The funds will support the establishment of Community Care Centre that will offer Nodding syndrome patients free medical care and musculoskeletal physiotherapy which assist in strengthen body muscles and help in containing any advance effects of the disease on children.

A portion of the fund will be used to support our small scale commercial farming initiative for the affected families in order for these families to have the capacity to produce quality food for both household consumption and open market sell. This will guarantee household food security, improved dietary intake and increased household incomes hence reducing on their vulnerability to Nodding syndrome disease impacts.

Our health care support initiative strives to build a self sufficient health care and nutrition support system for Nodding syndrome children. This will be achieved through routine training of village health teams (VHTs) by MARO Clinic team in the medical requirements, best nutritional diets and musculoskeletal physiotherapy care for Nodding syndrome patients. The VHTs will in turn pass on this knowledge and skills to the community members, hence enhancing their capacity to be self sufficient since they spend most of the time with these children.

Our approach is based on provide quality health care support to the vulnerable populations, in a timely manner while empowering the community to have the capacity to manage Nodding syndrome with the little resources at their disposal.

1. Reduce the occurrence of Nodding syndrome disease by 50% in the rural communities of Gulu district and Northern Uganda. This will be achieved through creating awareness about the Nodding syndrome in the community and ensuring the communities adopt preventive measures that help contain the spread or birth of new infections.

2. Improved growth and development for Nodding syndrome affected children in Northern Uganda. This will be achieved through training family members on right nutrition diets for Nodding syndrome patients and encourage the affected families to maintain these diets through routine VHT follow ups.

1. Number of families participating in our Nodding syndrome health care support initiative.

2. Number of children receiving or have received treatment for Nodding syndrome from our health care support initiative

3. Number of children reporting improvement in their health conditions.

4. Percentage drop in the rate of new Nodding syndrome infections in the communities.

Children who have Nodding syndrome have been through stigmatization, depression and need more than a combination of medical treatment, nutritional dietary intake and physiotherapy to be able to have a normal growth. The affected families need to be train in basic nutritive and childcare skills to enable their children live a normal life. The affected families need to be able to manage the spread of and prevent the outbreak of new Nodding syndrome infections at a household fostering a sustainable community health care system. If these aspects of their lives are not considered, any healthcare training will not likely yield the to a permanent change in their lives.

We are currently using text system in which the affected family send an SMS to a VHT with a brief note. The VHTs reads through all his/her SMS, prioritizes the patients and design a home visit route plan. These route plans a designed to offer each affected household ample time to engage with the VHT, receive any trainings and medication from the heath care Centre.

SMS is the cheapest, reliable and most affordable means of communication in rural communities in Northern Uganda. A person only needs a basic phone to send out a text to VHT or any other person to initiate communication, that is why we have decide to use the commonly used means of communication to ensure families with Nodding syndrome patients easily contact VHTs.

Our management team is composed of both men and women of different ethnical, religious  and academic backgrounds. 40% of the management team is made up by women and 2% of the team are staff living with disabilities. Representatives from the community and other local stakeholder are part of our project team. It is from our diversity that we are able to design and implement activities that have a lasting impact in the rural communities. Our core values include; respect, integrity, equity, confidentiality and respect for both staff and any other stakeholder.

Our goal is to create a conducive work environment where everyone can freely interact and access information beneficial to their well-being and to their community at large.

Nodding syndrome health care support initiative model is aimed at equipping family members of Nodding syndrome victims with the right nutritional knowledge, medical and physiotherapy skills to enable their affected family members have an opportunity to experience normal growth and development. We have integrate small scale commercial farming support project to enable each household to transform their small farms into income generating ventures. This facilitates increased Household food supply and income, therefore self sufficient families and communities.

We are establishing partnerships with other development agencies with a shared vision as we look out for more grant support to finance our initiatives since we are a non-profit NGO.

We are looking into offering consultancy services to raise funds that will support our projects developed to help vulnerable communities and marginalized people have a better

We have conducted a two year consultancy project for Gang Pur limited in building the capacity of smallholder farmers in small scale commercial vegetable farming for sustainable household income. The income generated from this contract was used to conduct the studies on Nodding Syndrome affected families in Gulu rural communities.