Uganda – Nodding Disease – No known cure – 5000 cases now in LWF project areas!

by Jesse Kamstra,  LWF Country Representative, LWF Uganda & Burundi

Nodding Disease – is ravaging the lives of thousands of families in northern Uganda

Nodding disease has ravaged families and left thousands in a state of utter dispair in the LWF project areas of Kitgum and Pader

Dear All,

Imagine you have seven healthy children. Now imagine that over the past four years, one of your children falls sick to a mysterious disease each year. This disease has no known cause and no cure. Four years later, you are now left with five children, of which only three are healthy; you are left with limited resources since you are unable to farm in fear of your children having an ‘episode’ while you are out; and you are left with questions but no answers. Unfortunately, for those families living in Northern Uganda this is a reality.

Nodding Disease in LWF Project Areas – We at LWF-Uganda write to inform you of this extremely pressing issue that is greatly disturbing the community members LWF works with in our northern districts of operation—Kitgum and Pader. A mysterious disease, commonly referred to as the ‘Nodding Disease,’ has ravaged families and left many in a state of utter despair. This progressive disease predominately targets children between the ages of three and 18.  It can be fatal and is characterized by head nodding, mental retardation and stunted growth. With time, symptoms worsen and include blindness, body stiffness, endless running of nose and saliva, in ability to control bowel and bladder and eventually death. The disease first appeared in the communities around 2008; however, only a handful of community members were affected. Now, just four years later, more than 3,000 children have been diagnosed with the disease but entire communities are handicapped with caring for these children and plagued by the fear of the disease’s unknown.

Immediate Action needed – LWF-Uganda has always strived to ‘Uphold the Rights of the Poor and Oppressed’ in these regions. We provided the community with emergency relief during the LRA insurgency and over the past five years have assisted them in resettlement and creating sustainable livelihoods. Now, with many of these people having left the IDP camps a few years ago—disaster is striking again. In order to continue to ‘Uphold the Rights of the Poor and Oppressed,’ LWF needs to immediately take action to support the households affected by this Nodding Disease.

No Known Cure – While the cure and cause remain unknown, LWF believes action can be taken now. Given our history in the area and our extensive work dealing with livelihoods, sanitation, nutrition, advocacy and providing psychosocial support, our services are imperative for helping those affected families regain a dignified lifestyle.

We need your support – In order to prioritize the needs of these nodding disease victims and their families, we need your support. We need to expand the scope of our current programs as well as develop new programs specifically geared to supporting the Nodding Disease victims. In order to do this we request your monetary assistance and/or your assistance in gathering more awareness and supporters to this deadly disease.

Will share Concept Note for Fund Raising – By the end of the week, LWF-Uganda will supply you with a brief concept note that will detail the specific impacts of the disease, our intended actions and their objectives. We hope that this document will help you raise funds, as well as, encourage you to disseminate throughout your circles to raise awareness.

In addition, in collaboration with other stakeholders, LWF is in the process of developing a funding proposal that details the specific livelihood needs of the affected, the gaps in services provided and the proposed way forward. We hope to have this completed in the next month. In the meantime, we encourage you to read up on the disease. We have attached links to some recent articles about the disease for your convenience. As you will find, this disease is starting to receive a lot of press. As it moves to the forefront of the press, we ask you to help us take action to support these families in need.

You can read more:

Thank you for your time.

Jesse Kamstra

Country Representative

Lutheran World Federation (LWF), Uganda

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