Sandra Dongo Botolo: Wellesley Bailey Awards Winner 2024

Sandra Dongo Botolo is one of four individuals to win the Wellesley Bailey Award in 2024. This is her story.
Sandra waited far too long for her diagnosis
At the age of nine years old, Sandra noticed that she had a painless mark on her face. She and her family approached a number of medical centres, but no one managed to find a correct diagnosis.
It was only in 2014, 20 years after the mark first appeared, that Sandra finally got answers. By the time she visited the Clinique Universitaire de Kinshasa, Sandra was suffering from horrible wounds on her hands and her legs, which resulted in the loss of her toes. The clinic referred her to the National Leprosy Elimination Programme, who confirmed that Sandra had leprosy.
Even once she had her diagnosis, Sandra’s experience of leprosy was far from straightforward. She regularly had to travel more than 10 kilometres in order to access her leprosy medication.
Sandra has also had great challenges with recurring leprosy reactions, which have caused her problems with her hands, feet, and eyes over many years. She has received treatment in DR Congo, but her challenges have been so complex that she had to seek out top specialists for help while she was at the International Leprosy Congress in India in 2022.
Leprosy had devastating effects on Sandra’s childhood
Sandra was kicked out of her family home four years after she first noticed symptoms of leprosy and was raised by Catholic Sisters for three years. She returned home in 2001 but frequent episodes of leprosy reaction have caused great problems and in 2023, she once again faced rejection from her family.
Sadly, Sandra was also forced to abandon school for two years because of the stigmatising marks caused by leprosy across her body. She was even given the horrible nickname ‘leopard child’.
Life began to change for Sandra when she came across OPALCO.
OPALCO is DR Congo’s national Organisation of Persons Affected by Leprosy (Organisation des Personnes Affectées par la Lèpre au Congo). Sandra came to hear of OPALCO in 2019 through The Leprosy Mission. At the time, OPALCO was in its very early days and as Sandra became more and more engaged with their work, her confidence began to grow and she began to overcome the self-stigma she was experiencing.
Sandra began to speak about her experience of leprosy publically. She spoke at churches, schools, and other public places without shame. Before then, most persons affected by leprosy had been ashamed to speak publically about their stories. Sandra was one of the pioneers of giving her testimony of leprosy in Congo and she began to inspire others to do the same.
Sandra’s voice has become instrumental in discussions around leprosy in Congo
Since 2019, a delegation from OPALCO has always been invited to the annual meetings of DRC’s Leprosy and Tuberculosis Programme. At these meetings, Sandra and her OPALCO colleagues speak about their experiences and share perspectives that would benefit the work of the programme. Most attendees at the meeting listen very closely to what they have to say.
In 2021, Sandra became the Coordinator of OPALCO at the organisation’s elections. Thanks to Sandra’s work as Coordinator, OPALCO has spread its remit across more and more of the vast country of DR Congo. Today, no leprosy work – whether through the government or through leprosy NGOs – happens without the engagement of OPALCO. That is in large part thanks to the excellent leadership of Sandra.
Sandra is a natural leader and thanks to her work, leprosy is become more and more well-known and well-understood in DR Congo. Communities are coming to understand that persons affected by leprosy pose no danger to society and that everyone has a role to play in the fight to end leprosy. Thanks to Sandra and OPALCO’s efforts, more people in DR Congo know to spot suspected cases of leprosy and refer them to the correct health facilities in order to prevent impairments and complications. This is a major victory and the start of something immensely positive for the people of DR Congo.
Under Sandra’s leadership, OPALCO has grown its networks amongst organisations of persons with disability in DR Congo and has become a member of AfricAlliance, a continent-wide organisation of persons affected by leprosy.
Sandra herself has attended international meetings in the UK, India, and Tanzania to act as a self-advocate and represent the voices of her OPALCO members.
The former Director of the National Leprosy Control Programme, Dr JN Mputu Luengu served in the fight against leprosy for more than 30 years and he had this to say about Sandra, “Sandra’s commitment to supporting persons with disability and persons affected by leprosy in overcoming so many prejudices is, for me, unforgettable.”
Sandra is a worthy winner of the Wellesley Bailey Award 2024.