Belsti, Merhatsedik and Hailemariam live in Gojjam, northwestern Ethiopia. They share a similar agony: at night, a constant itch that overwhelms them; in the day, widespread rashes and sores that lead them to be insulted and ignored by people around them.
Many people affected by scabies – a parasitic infestation caused by microscopic burrowing mites that lay eggs under the skin, triggering a host immune response that leads to intense itching and rashes – experience isolation and stigma.
Scabies spreads easily from person to person, mostly skin to skin and especially spreads among people who live close together. Scabies is treatable, but hard to get rid of. Whilst scabies is defined by the World Health Organization as a Neglected Tropical Disease, it affects vulnerable populations around the world, including in nursing and residential care settings in the UK.
A documentary film, “The Agony of the Night”, by independent Ethiopian filmmaker Eyerusalem Kassahun from the NIHR 5S Foundation, a partnership involving the Institute of Development Studies, shares the stories of people in northwestern Ethiopia affected by scabies and the health workers treating them. It recently won the Film Award at the International Society for Neglected Tropical Diseases Festival in March 2023.
“Scabies is often thought of as a poor person’s disease and there is a lot of stigma for people that suffer with it, particularly when it is visible to others” describes Aderau Gete, a District Nurse interviewed for the film, “like the story of a student in year 12, when I asked him Why do you wear gloves? He said it is because the discrimination from other people was hurting him more than the disease. The terms used to describe people who experience scabies are highly derogatory. More than that, I feel ashamed of myself, I don’t want to play with my friends.”
Dereje Wonde, a PhD researcher and lecturer of sociology at Bahir Dar University in Ethiopia, collaborated with Eyerusalem on the documentary:
“In 2015-2016 Ethiopia experienced a series of scabies outbreaks due to effects of climate change and draught. The lack of access to water and sanitation facilities exacerbates the conditions in which scabies thrives. I see my role as a researcher is to facilitate people narrating their experience. And then making sense of what I am finding to help understand why and how certain populations are being particularly affected by the outbreaks, in this case religious students in the Gojjam district.”
A member of the 5S Foundation, Dereje is using ethnographic approaches to explore scabies incidence and management in rural communities, including among the religious students featured in the documentary.