‘We don’t want sympathy, but respect. Allow us to live a dignified life,’ says leprosy survivor on World Leprosy Day

Mahatma Gandhi had dreamt of not only treating leprosy patients, but also accepting them in mainstream society. Today, while India is close to eliminating the disease, the stigma attached to it still prevails

Addressing the nation on Mahatma Gandhi’s death anniversary (January 30), which is also observed as World Leprosy Day, Prime Minister Narendra Modi spoke about Mahatma Gandhi’s concern for those suffering from leprosy.

Modi reminded the nation of Mahatma Gandhi’s concern, which is not just to treat them, but also to make them a part of mainstream society. However, leprosy survivor Rasul Mulla’s account hints that India still has a long way to go to achieve Mahatma’s dream of giving them equal acceptance in the society.

Mulla, now 63, was a teenager when he was diagnosed with leprosy in a medical camp held in his school in Solapur. Though Mulla was cured within six months of treatment, he could not find a place of respect in the society.


Leprosy survivor Rasul Mulla

“I was 15 when I diagnosed with leprosy in medical camp of school. After six months of treatment, I recovered completely, but I lost my four fingers, which left me disabled forever. Though my disease was cured, but I faced discrimination among villagers due to their ignorance. No one was willing to talk or even sit next to me,” said Mulla.

Originally from Akkalkot city of Solapur district in Maharashtra, Mulla was forced to leave his education halfway due to the villagers’ misconception.

Mulla decided to give his life a direction and came to Mumbai. He stayed at Tromboy’s Dattanagar leper colony with his sister. 

“I was low on my moral due to the social discrimination and I didn’t feel like going to school. I came to Mumbai and took up odd jobs. More so, I even begged for survival. But, I wanted to do something for the leper society and so I stared working as a social worker. I organised medical camps and awareness campaigns encouraging children to educate themselves on leprosy. I thought to myself, even if I could not complete my education, I will work for education of these children,” said Mulla

Mulla began working relentlessly to educate leprosy kids. Today, Mulla is the chairman of Abhinav Dnyanmandir School of Trombay, which was started by leprosy patients in 1964 for leprosy kids. The school is affiliated with Government of Maharashtra.

For his service to the society, Government of Maharashtra awarded Mulla with the Ideal Leprosy Service Award (2016) and he has also been conferred with Dr Ambedkar National Fellowship Award (2010).

Rasul Mulla accepting ideal leprosy service award by Kalyan-Dmobivali Muncipal Corporations Deputy Mayor Vikram Tare
Rasul Mulla receiving the Ideal Leprosy Service Award

Mulla married Rashida Mulla, a leprosy patient, and has a son. Mulla says his son is completely healthy and runs a shop.

Leprosy is completely curable. Nobody should be afraid of it or discriminate survivors like us. We don’t want sympathy, but respect. Allow us to live a dignified life,” said Mulla, who says he still regrets not completing his education.

Mulla is not an individual case, there are many like him living in different leper colonies situated in Mumbai, who are still struggling to get respect and acceptance in mainstream society. There are six leper colonies in Mumbai. Trombay is the largest one with 200 families. Others are in Mulund, Borivali and Goregaon.

baba amte

The great social worker Baba Amte, who served all his life extensively for leprosy people, used to say, “I took up leprosy work not to help anyone, but to overcome that fear in my life. That it worked out good for others was a by-product. But the fact is I did it to overcome fear.”

Doctors strive to remove stigma, overcome hurdles

Mumbai-based dermatologist Dr Raina Nahar of Nanavati Super Specialty Hospital, throws light on poor understanding of leprosy in Mumbai.

“Despite all efforts to disseminate the right information amongst people about leprosy, we still face hurdles in changing their mindset. Sometimes, we also come across new cases where the patient is hesitant to start a treatment because of the social stigma,” said Nahar

She also explained various misconceptions among people about the disease.

“There are a lot of misconceptions associated with leprosy, right from confusing it with Vitiligo (a long-term skin condition characterised by patches of skin losing its pigment), to considering it as contagious or a disease which occurs in cursed and the patient will end up being mutilated or handicapped,” added Nahar.

What is leprosy?

Leprosy is a bacterial infection which can be totally cured with the advent of newer anti-leprosy drugs. Also it’s a low infectivity and slowly spreading infection, so there is no need to outcast affected individuals. Multidrug therapy (MDT) is available freely at government set-ups with regular check-ups , surgeries for deformities and rehabilitation for handicap to help them become socially and financially viable.

Nahar says she receives around 2-3 leprosy patients a months as most of them prefer a government hospital for treatment. A study conducted in tertiary centres of Mumbai to analyse leprosy trends between 2008 and 2015 observed that a total of 578 new cases of leprosy were registered in Mumbai. Majority of them, 68%, were migrants.

India’s fight with leprosy

In 2005, prevalence of the disease was less than one case per 10,000, which means that India has been close enough to achieve elimination of leprosy. But there has been a wide range of discussions on how a complete eradication of leprosy can be achieved.


Rasul Mulla distributing prizes to students of Abhinav Dnyanmandir School in Trombay

Ashutosh Prabavalkar, Head Programmes (Leprosy) and Project Director, Alert India, giving an overview of leprosy condition in rural parts of Maharashtra said social stigma is the biggest hurdle in leprosy treatment process. Among other challenges, active transmission in community and delayed diagnosis of leprosy is also a problem.

Asking about prevalence of misconceptions, Prabavalkar says people are still scared of leprosy, both in rural and urban areas.

“Every year, number of leprosy patients is declining, but people don’t come forward due to social stigma attached with it. This is why many cases remain undetected. So, it’s important to bring a change in their behaviour. Spreading awareness in communities and health-care providers regarding early leprosy symptoms, engagement of private health-care provider in early leprosy diagnosis and increasing capacity of general health system staff, along with targeting high-endemic areas of leprosy transmission may help in reducing diagnosis delays,” said Prabavalkar.

It is equally important to ensure that major steps are taken to not let even a single case go undetected and untreated for complete eradication of leprosy.

Maharashtra fights leprosy

Leprosy-Hand-X700

National Leprosy Eradication Programme (NLEP), previously a vertical programme, was integrated into the general health system in 2005. On January 30, 2006, the Government of India announced ‘elimination of leprosy as a public health problem’ at national level

Dr Sanjeev Kamble, joint director of health (leprosy) in Maharashtra, said 15,000 cases were detected in 2015 and last year, 11,000 leprosy cases were received. Majority of cases were found in tribal areas like Palghar, Gadchiroli and Chandrapur.

Looking at the social stigma and misconceptions among the people, Government of Maharashtra is organising awareness programme on January 30 in rural and tribal parts of the state.

“A massive door-to-door Leprosy Case Detection Campaign was launched by National Leprosy Eradication Programme to detect hidden cases of the disease. The campaign was conducted between March-April and September-October in 16 tribal districts of Maharashtra wherein 3,885 cases were found,” said Kamble.

Related links
Scale up efforts against leprosy. Focus on preventing disabilities in children