From dramatic mountain summits, to flat green plains, to the winding Nile River, Uganda’s West Nile sub-region reveals a tapestry of landscapes. Small villages and towns sprinkle the main road where a myriad of vendors display mangoes, vegetables, and fresh fish for sale on its edge.
The hum of daily life in West Nile obscures an unexpected fact about this region: it hosts one of the world’s largest refugee populations. Bordering the Republic of South Sudan and the Democratic Republic of Congo, the region has seen a vast influx of people seeking shelter and protection from conflict and persecution. Once refugees cross the border, crowded living conditions, limited access to clean water, and poor sanitation in settlements can lead to other threats such as infection and disease.
Recently, I traveled with trachoma and eye specialists from Uganda’s Ministry of Health and RTI International to refugee settlements in northwest Uganda. Over 20 days, the trachoma survey teams split up across 27 settlements to check the eyes of refugees for signs of trachoma, a painful and chronic eye infection that can lead to permanent blindness. Their efforts are part of a new mapping initiative to determine how prevalent neglected tropical diseases (NTDs), such as trachoma, are among refugees in Uganda’s northwest.
Uganda has made incredible progress against NTDs. For example, 11.2 million people are no longer at risk for trachoma. RTI International, through USAID’s NTD Control Program and the ENVISION project, has been a key partner in these efforts, and is now supporting the Ministry of Health’s work to assess burden, and if needed, treat and prevent NTDs among refugees -- a key part of the country’s strategy to eliminate these diseases.
Our day started with a 1.5 hour drive down winding, bumpy roads, following only the dust of the nine cars in front of ours for navigation. It was hard to pinpoint where settlement areas began as older homesteads now blend in with surrounding villages and tarps blazoned with the UN Refugee Agency (UNHCR) logo are scattered more than 20 miles in each direction of the settlement area.
The settlement began to form as a grid of roads lined with improvised houses and tents emerged under a canopy of dust. Market stalls and small restaurant areas lined the main road, while through the windows of a few buildings I could see teachers instructing classrooms of students. The vast, but seemingly organized, area traced the contours of the hills stretching to the horizon.
Our mapping team went house to house with the assistance of a community health worker who knew everyone by name, age, and personal history. Families welcomed us into their homes, gathering chairs and encouraging us to take a seat.
There is no diagnostic test to detect trachoma. Instead, these highly trained workers examine the inside of people’s eyelids for tiny bumps (follicles) and inflammation, a sign of infection. They also collect information on each household’s access to water, sanitation, and hygiene.
As members of the mapping team flipped the eyelids of each individual to check for signs of trachoma, personal stories poured out. There were splintered families, separated across borders and between refugee settlements. There were men who lost wives, and sisters who stepped up as the head of household in their parents’ absence. There were stories of land once owned and jobs once worked – all now lost.
The mapping team displayed incredible commitment, energy, and diligence as they worked in such a challenging environment. While there were many homes to survey, there was always time for team members to listen to families’ concerns and needs, many outside their scope. They gently coaxed shy children over for eye exams and warmly reassured nervous on- looking siblings. One eye specialist, Dr John Binta Kahwa, even brought an extra pair of reading glasses and performed vision tests on refugees with visual impairments. A man’s face flashed with joy when he could once again read the small print of his Bible, and he eagerly collected information on how to get a pair of his own.
Dr John Binta Kahwa started doing outreach eye services in rural areas of Uganda in the early 1990s. “Many patients were coming to us with severe complications from trachoma… The numbers were huge and staff was limited. Hence, we saw the need to train more and more health workers to prevent these patients from becoming blind,” he recalls. “I found it a great honor and privilege when I started working with trachoma teams.”
During my time spent with Dr. John Binta Kahwa and other trachoma mapping team members, I learned of their own sacrifices. Many had traveled far distances from their own homes and families. Some held other occupations outside their work for the Ministry. They spoke of challenges they faced reaching isolated communities and overcoming language barriers; but all were motivated by their work to improve the health and quality of life of Ugandans and refugees, alike.
Since NTDs can hinder the potential of individuals and communities, Dr John Binta Kahwa says progress against NTDs will support the country’s development more generally. “Uganda is striving to achieve middle income status by the year 2020. This will be very difficult to achieve if there is no serious fight against NTDS.”
Globally, USAID-supported efforts for trachoma elimination have resulted in 102.4 million people no longer requiring treatment; progress which could not have been made without the extensive collaboration between USAID and country governments, like Uganda. The commitment and work of the trachoma mapping teams will not only help ensure that after making their long, treacherous journeys, these men and women, husbands and wives, and brothers and sisters aren’t disabled by something as preventable as blindness from trachoma, it will also contribute to the success of a worldwide initiative to eliminate trachoma that stretches far beyond the refugee settlements and Ugandan borders.
Bio: Carly Smith is the Neglected Tropical Diseases (NTD) Program Assistant in the U.S Agency for International Development’s (USAID) Bureau for Global Health, Office of Infectious Disease. She supports USAID’s NTD Program, which aims to control and eliminate seven priority NTDs. Carly grew up in Chapel Hill, North Carolina, is an avid UNC basketball fan, and currently lives in Washington DC, USA.