F

ifty four-year-old Holil has fought leprosy since he was a boy, but against all the odds, today he is independent and lives happily with his family in Tangerang.

In 1967, Holil received weekly injections for leprosy in his hometown in West Java, but it was not enough and the disease caused deformities to his hands. It was only after this point that he was referred to Dr. Sitanala Hospital in Tangerang to receive treatment for the disease.

For fear of being ostracized by his community, he decided never to return to his village. '€œI could not go back because of the stigma and shame attached to lepers there,'€ he said.

He did not let the deformity of his fingers prevent him from working. A survivor of a disease that causes permanent impairment and deformities, today Holil builds prosthetic limbs for living. He also has a car rental business.

Unfortunately, Holil'€™s story does not represent the majority of leprosy survivors.

According to the WHO, Indonesia has the third-highest level of leprosy infections in the world, after India and Brazil. In 2013, the WHO recorded 16,856 new leprosy cases in Indonesia. There were 126, 913 new cases in India and 31,044 in Brazil. The total detected new cases globally in the same year was 215,656.

World Leprosy Day is observed on the last Sunday of every January.

'€œThe main reason for the high incidence of leprosy is the difficulty in its early detection and treatment. There'€™s a lack of expertise in primary and secondary health services and as [Dr. Sitanala Hospital] is referral based, our patients are usually in the later stages of leprosy,'€ said Celestinus Eigya Munthe, the hospital'€™s rehabilitation department chief.

Fifty-year-old Satori B. Husein did not realize he had leprosy until it was too late. His wife died four months ago due to the same disease.

'€œI didn'€™t know I was infected with leprosy. I think it started in 1980,'€ said Satori, who works as a street cleaner for Tangerang municipality.

In Indonesia, leprosy is associated with stigma and social discrimination.

A resident of Tangerang, Junita Iminggali, said she did not want to be around lepers and it did not matter for her whether they had been treated for the disease or not.

'€œThey give me goose bumps. They smell, look bad and I'€™m worried I'€™ll catch the disease. It'€™s hard to look at them,'€ she said.

Earlier this month, Tangerang Mayor Arief Wismansyah urged the central government to relocate Sitanala Hospital, as he deemed that lepers had tarnished the city'€™s image.

Sitanala Hospital uses a holistic approach in treating leprosy patients, with the primary duty to cure and rehabilitate patients.

The Health Ministry hospital provides rehabilitation facilities such as training for those who have lost their fingers on how to use hands '€” until they can contribute to the community and live independently.

'€œWe cannot work alone, and we need other public services to help. This would immediately reduce the problem,'€ Munthe said, adding that people should not feel '€œpity'€ toward those with leprosy because of the latter'€™s disabilities.

'€œWe need to empower them. Simply giving them money is not a solution.'€

In 2010, five students from the University of Indonesia founded the Nalacity Foundation, a social entrepreneurship project in a ex-leprosy patient village behind the hospital.

The award-winning project aims to help people with disabilities to have a better quality of life '€” by empowering them to work.

'€œWe help 20 mothers who have disabilities due to leprosy. We empower them to work and they make hijab beads,'€ said Nalacity volunteer Aprilia Pranoto.

All proceeds from the sales of such products are given directly to the workers. Products can be bought from the Nalacity shop or website at nalacity.net.