Jennifer Thorpe from Polygeia writes about the gender issues linked with leprosy. 

The past three decades have seen huge advancements in the diagnosis and treatment of leprosy, freeing over 16 million people from the disease since the introduction of multi-drug therapy. However, an estimated 3 million people still remain undiagnosed, a disproportionately large number of whom are women. Whilst gender inequalities are apparent in cultures worldwide, the psychosocial and economic problems caused by leprosy are further magnified in women due to existing gender disadvantages.

Stigma and discrimination 

Women with leprosy are subject to heightened levels of discrimination, degrading their social status and mental wellbeing. Living in fear of stigmatisation and the prospects of losing their role in society, many women choose not to acknowledge their condition, or do not pursue adequate treatment, reducing the visibility of women living with the disease and leading to poorer health outcomes amongst female populations.

Serious consequences if left untreated 

If leprosy is treated in its early stages, long term damage or disability is unlikely and early intervention is crucial in mitigating the future adverse health implications for those infected with the disease. However, if left untreated, leprosy eventually damages large nerves in the elbows, wrists, knees and ankles, resulting in a loss of sensation in the hands and feet, together with muscle paralysis. Additionally, by damaging nerves in the face, leprosy can also lead to blindness and facial disfigurement as bones in the face become damaged. The resulting physical impairments have dire implications on an individual’s wellbeing and quality of life, limiting their ability to carry out even basic day-to-day activities.

Gender roles often prevent diagnosis 

Socio-cultural factors related to gender roles are a major factor contributing to women’s reluctance or inability to seek medical treatment. Women are often tied to their homes by childcare and domestic duties and often feel pressured into prioritising their domestic duties above their own personal health. As such, most women delay going to hospital until their husband or guardian felt it was necessary, and would still have to participate in household chores despite their illness. The pressure to perform household chores, perceived decline of their social worth, along with the inconvenience and limitations of accessing health care, leaves many women unable to complete their treatment.

Gender roles reduce access to effective healthcare; stigmatisation, feelings of inadequacy and lead many to hide their symptoms altogether. These pressures are further increased by discriminatory marriage customs. In many countries, such as Indonesia, fear of contagion combined with supernatural beliefs provides sufficient grounds to divorce a spouse. If a husband chooses to divorce his wife because of her illness, women can often find it difficult to remarry, thus further degrading a women’s social status, heightening levels of isolation, and often leading to significant damage to a woman’s mental health, physical health and overall well-being.

A factor that further leads to self-stigmatisation in women and avoidance of treatment is due to significant disparities in education and access to information on health. Many women do not fully understand their condition, sometimes lacking an awareness of the symptoms of leprosy or the kinds of treatment that are available to them. The cultural practice of early marriage in some countries is a contributing factor in reducing access to education, and, as such, leading to greater levels of illiteracy and a reduced understanding of health conditions.

What can be done to improve the situation?

A gender sensitive approach must be taken by charities, national health programmes and international organisations, when implementing future strategies to reduce leprosy transmission. Organisations must approach gender inequality in a culturally sensitive way, by engaging with local communities and working with local health officials, teachers and community leaders, who have a greater understanding of the cultural processes of within their local area. A focus on education and greater collaboration with influential community members can facilitate the creation of bespoke and trusted strategies to tackle gender inequality. Finally, it is the role of national governments to repeal laws that discriminate against people affected by leprosy, with the ultimate aim of ending stigmatisation and leprosy discrimination through a state sponsored, legal framework.

Jennifer Thorpe, Polygeia

Lepra is helping to close the gender gap

We work with many women how have suffered terrible discrimination purely because they have had this curable disease. When Komola's husband found out she had leprosy he beat her and eventually left her - however with our help she is finally regaining her independence. 

Read Komola's story