A COVID-19 community support project for persons affected by leprosy was carried out in four districts of a leprosy-endemic division of northwest Bangladesh between June and July 2020. The project was funded by Sasakawa Health Foundation and led mainly by local self-help groups (SHGs) with the support of Lepra Bangladesh.

It involved delivering emergency relief supplies to those impacted by the coronavirus pandemic, providing advice on preventing COVID-19 as well as nutritional information to build up resistance to disease, and counseling.

In implementing the project the SHG leaders were assisted by “community champions”—teams of persons affected by leprosy and their families from the local community who have been selected and trained by Lepra in skills such as mental health counseling and disability care. These “champions” provide support for other persons affected by leprosy and those with disabilities in the community.

There were 36 community champions involved in this project, many of them women. In addition to drawing on their own or their family’s experience of leprosy and their training, they have a female viewpoint and sensibility that attunes them to problems a household or a child may be experiencing. For women in the community, these champions are a shoulder to lean on and someone they can turn to for advice.

Community Champion, Maksuda (39)

Maksuda (39), who took part in the project in Sirajganj District, is one of the community champions.

Maksuda was diagnosed with leprosy at the age of 18, a year after her daughter was born. As soon as her husband learned the news, he divorced her and Maksuda had to bring up her daughter alone.

As in other countries, stigma and discrimination toward persons affected by leprosy in Bangladesh persist, with the situation said to be particularly severe for women and children. Many people are evicted from their homes just because of leprosy and it is hard to imagine the suffering and sadness of those who have been rejected by their family and community.

Following her divorce, Maksuda was at a loss as to how to provide for herself and her daughter. But with the support of Lepra, she learned sewing and was eventually able to make enough to live on. Currently, she makes a living by raising chickens. Meanwhile, the daughter she struggled desperately to raise has turned out splendidly and is studying physiotherapy. She also supports her mother’s activities as a community champion.

Maksuda believes that it is important for everyone in the community to look out for each other and encourage one another so as to overcome the hardships caused by the coronavirus pandemic.

“Whether someone has leprosy or a disability,
I want to create a community in which everyone can lead a dignified life.”

This is Maksuda’s wish.

Many problems associated with leprosy, such as stigma, discrimination and financial hardship, remain, but the situation of persons affected by leprosy has grown especially severe during the coronavirus pandemic. We hope that community champions such as Maksuda continue to work closely with organizations of persons affected by leprosy to help those affected come through these difficult times.

For news of day-to-day activities, see the Facebook pages of the Bogura Federation, a self-help group of persons affected by leprosy, and Lepra Bangladesh.

See our August 19 post for more information about the project we supported in Bangladesh.

See here for more information about what our Foundation is doing to support communities of persons affected by leprosy during the COVID-19 pandemic.