Background

Leprosy is a highly curable disease with the right medication, but causes devastating symptoms if left untreated. After being declared eradicated in India almost two decades ago, it has re-emerged with high intensity. 

As leprosy is one of the oldest diseases known to humanity, the history of its patients has been one of stigma and exclusion. This is due to the religious and cultural frameworks which governed the common attitude of that time, which considered diseases as divine punishments for having committed sins and broken taboos resulting in complete ostracism from the community. It is deeply unfortunate that the stigma persists so enormously into the 21st century, with many patients who fall victim to Leprosy’s more advanced symptoms. 

This is caused by the hesitation patients feel to seek treatment due to the fear of stigma, and a lack of awareness on how to do so. It is also due to this stigma associated with Leprosy that countries like the US and Brazil have replaced the term “leprosy” with “Hansen’s disease.”. Further, 

Data collected by the UN in 2018 estimates that there are over 200,000 cases of leprosy every year across the world, with the highest number of cases in India, followed by Brazil and Indonesia. Leprosy is generally associated with poverty as it is usually contracted due to the lack of adequate hygiene and sanitation facilities. It is also generally the impoverished who do not have the resources or information on how to seek treatment. It is also largely prevalent in tropical countries with large numbers of people living in poverty. 

These facts make the underserved much more vulnerable to Leprosy, which is also compounded manifold by the fact that the disease manifests itself visibly on the body in the form of markers such as skin lesions, chronic wounds, and loss of digits. This makes it impossible for patients to remain discreet about the disease, making it hard to lead a normal life and earn a living due to the stigma they face from society. Contrary to popular belief, leprosy does not spread easily from person to person through casual contact such as sitting with them or talking to them, requiring prolonged contact over a period of several months to become infected. Such misinformation further adds to the stigma against people living with the disease. It is thus imperative to address the socio-economic and cultural contexts within which leprosy is embedded to ensure the well-being of people with leprosy by breaking down social barriers and fostering inclusion. 

During her medical summer program at Brown, Taarah Chandiok had to choose a disease to do research on as a part of her final project,  and she chose Leprosy as she had known for years about the stigma attached to people affected by leprosy. She crossed a leper colony daily on her way to school, and her questioning young mind had always wondered how, in this day and age of medical advancement, could there still be people who did not have access to basic and timely treatment to prevent such advanced and debilitating symptoms. During her research at Brown she was amazed at how preventable Leprosy is, and since then she became inspired to create an impact and dispel any myths surrounding it .