It took 10 years to reduce the stigma of leprosy in society, during that time, the disease spread silently in its unique way

photo credit: Angga Yanuar

A turn of events she had never imagined occurred in her life. Ibu Linda, a resident of Pasarean Village in Tegal Regency, had to undergo leprosy treatment in 2013. A disease often misunderstood as a curse or karma for past sins, leprosy caused her world to collapse seemingly. The diagnosis shattered all the hopes and dreams she had built over the years. Ibu Linda’s days were filled with shadows of fear as she faced social stigma and discriminatory treatment from those around her. Neighbors who once greeted her warmly began to distance themselves, friends started to disappear, and her dignity as a human being seemed to be stripped away by this disease. She felt powerless to fight back.

Ibu Linda was declared to have completed her treatment by Adiwerna Community Health Center after seven months of taking MDT. However, the road to recovery was not without obstacles. Leprosy left behind patches and was still considered contagious by the community. More than two years after completing her treatment, she and her family endured periods of deep despair. Their family business had to close. Without income, they could barely survive economically.

In early 2015, she began to muster the courage to fight the stigma. Her strength to rise again was support from the health workers, community leaders, and civil society organizations. They played a vital role through the MARDIKA program interventions developed by NLR Indonesia, Distric Health Office, and DSM Tegal. Behavior change communication effectively educated the community, enabling them to accept PEP-SDR intervention and understand the disease.

Slowly but surely, changes began to take place. It took 10 years to erode the stigma of leprosy in society, but they succeeded in dispelling unfounded fears and rebuilding the social bridges that had crumbled. Today, the residents of Pesarean Village have a better understanding of leprosy. They actively participate in case detection and are more accepting of those who have experienced leprosy. The village government shows tangible support through clear programs and budgets to achieve the triple zero goals: zero new cases, zero disabilities due to leprosy, and zero stigma.

The health services for leprosy are excellent and community support has increased significantly. But in early 2022, Fitri, Mrs. Linda’s eldest daughter, had to undergo multi-drug therapy. This disease is still spreading silently, in its unique way.

Penulis: Angga Yanuar 
Editor: Tim Media Pelita

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