Nodding disease is a mysterious illness that devastates victims, primarily children ages 5-15, by triggering a variety of symptoms including seizures, the inability to speak, and the inability to consume food. Eventually nodding disease kills many of its victims and scientists from around the world have been unable to determine the cause. This deadly disease arose in the 1960s, with reported cases in Tanzania and Sudan, however, more recently an outbreak has occurred in northern Uganda striking more than 3,000 children in the country. Ugandan and International medical professionals, including teams from the Center for Disease Control in the United States, have traveled to northern Uganda to investigate the disease, seeking to establish a cause and develop a treatment, with no success as of yet.
While Invisible Children’s focus remains on stopping the LRA and supporting our victims, some members of the Invisible Children family are currently working directly on the issue.
After spending the last three months of 2011 as a Roadie for Invisible Children’s Frontline Tour, Collines returned to Gulu looking for a part-time job while she also attended school at Gulu University. What she ended up doing was unexpected but has been a growing and learning experience for her: assisting in the research of the nodding disease.
“When I came back from the U.S., where I was a Roadie for Invisible Children, I was looking for a part-time job and was referred to an organization called Gulu Hope* by a former employer,” she explained. “Gulu Hope was starting a project, Haven of Hope, and its mission was to work to find what the practical needs of those are who are suffering or have family members suffering from nodding disease. The organization was looking for people to help them with their research. I started this work with them in January of this year,” she continued.
As part of Collines’ work, she enters data and travels and speaks directly to those affected or who have family members affected by the nodding disease. She takes photos to document the cases, asks questions, finds out what their practical needs are, and “gives families hope that there are people who care.”
Invisible Children applauds the work of Collines and Gulu Hope as well as the Ugandan Committee for the Red Cross, the International Committee for the Red Cross, the Danish Refugee Council, the German Refugee Council and the Center for Disease Control and all other organizations and institutions working to understand this disease and support its victims.
Jolly Okot, Invisible Children’s Regional Ambassador, visited victims affected by the disease in northern Uganda:
“Last week I had an opportunity to travel with the Gulu district leaders and other organizations like African Medical and Research Foundation (AMREF), World Vision, and the Ministry of Health, to visit many families whose children have been affected by the nodding disease. Talking to these families, they narrated how the disease has silently been eating up the community of Aromo Sub County and other affected sub counties in the Acholi sub region. The visit that was facilitated by Invisible Children in partnership with Gulu District was to shed more light to the plight of these families. The issue is a serious one and while outside the scope of the work that Invisible Children does, I am so grateful to leaders at the grassroots level, partner organizations, the local government and the Central government that is working so hard to find out the cause, solution and a way forward for these families.”
*Gulu Hope is a non-profit in the U.S., an NGO in Uganda, and a CBO in Gulu