When Matthias Duck developed a skin disease, he was rapidly diagnosed and cured within six months. That same disease cost Momina her home and children and left her with permanent disability. They had both contracted leprosy.
The disease has been curable for decades and treatment is free, but gender status and education can make a big difference to the outcome of a leprosy diagnosis. Matthias is an educated pastor working in a hospital in Paraguay and Momina a poor woman in Bangladesh.
When she felt symptoms her husband did not think they were serious enough to justify the expense and inconvenience of medical care. After four years of nerve damage which destroyed feeling in her foot, leading to injury and ulcers she was finally taken for treatment. But when she was diagnosed with leprosy her husband divorced her and left taking their son and three daughters with him.
Image: With permission from Matthias Duck
Women and girls face discrimination due to gender, potential disabilities and stigma - a triple jeopardy. According to UNDP, girls and women affected by leprosy make up some of the world's poorest and most marginalised groups, disproportionately affected by poverty, illiteracy and lack of education which act as barriers to seeking health treatment.
Community surveys show similar numbers of boys and girls are affected by leprosy, but almost two thirds of new cases reported are in males. In South Sudan, Cuba and Kiribati women comprised around half of the new cases reported, but only 24% in Madagascar, 17% in Timor Leste and in Pakistan only two out of 657 cases. This suggests significant under-reporting in some countries.
Poor access to health care means late detection. The few studies that exist for women show that the delay before diagnosis can be on average twice as long as in men and when diagnosed they suffered a higher proportion of disabilities. Leprosy is slowly progressive. Left untreated it causes nerve damage and loss of feeling in hands and feet. So a woman is at risk of serious burns while cooking or cuts to her feet and hands while farming. And the stigma of leprosy bears heavily on women.
In Bangladesh, where Momina lives, the 1898 Lepers Act, which gave leprosy as grounds for divorce, was not repealed until 2011. In the same year the UN passed a resolution on the elimination of discrimination against persons affected by leprosy and their family members. But nineteen countries still have laws that discriminate against people with leprosy regarding education, employment, housing, use of public transport, and eligibility for elected office.
Girls with leprosy face social discrimination and encounter difficulties in marriage. Wives like Momina, divorced on the grounds of leprosy face destitution. As Matthias Duck says "As an educated man I was fortunate to be unaffected by stigma or discrimination because I was diagnosed, treated and cured very easily."
Image: Courtesey of Lepra
Women and girls with leprosy and those affected by other neglected tropical diseases have the right to health care and the barriers to that stop this must be addressed. WHO and Ministries of Health need to recognise the influence of gender in monitoring systems and health services to prevent and stop transmission, as well as implementing community rehabilitation programmes for women and girls already affected by leprosy.
The UN should report on implementation of its resolution against discrimination of people with leprosy, governments need to repeal anti leprosy laws and offer support to people affected by leprosy to advocate for their rights according to a report, Triple jeopardy for International Womens Dayby ILEP, the International Federation of Anti Leprosy Organisations.
And Momina? She has joined a group with funding from a programme for ultra poor women and has bought goats that provide her with a small income. Equally important she has the support of other women in the group.