An aid project to support persons affected by leprosy in South Sulawesi, Indonesia, during the COVID-19 pandemic was carried out between May and August 2020 led by young leaders of the South Sulawesi branch of PerMaTa, an organization of persons affected by leprosy operating in three of Indonesia’s 34 provinces. Funded by Sasakawa Health Foundation and supported by Dare This Indonesia (DTI), the project covered five districts of South Sulawesi.

In addition to liaising with local authorities and health centers in each district, PerMaTa volunteers visited homes in remote areas and mountainous regions, delivering relief supplies to people facing difficulties because of the pandemic, providing them with information about the novel coronavirus, finding out if they had any problems resulting from leprosy and offering counseling and emotional support. Many of the decisions taken in the field were left up to the group’s leaders in each district. Working together with their fellow members, they overcame many challenges, which gave them great confidence.

Many of the locations they visited were difficult to reach and involved steep climbs. When they arrived in the general area, there was often no one to help them find the address they were looking for and they had to search for themselves. Despite all these difficulties, however, these young people never gave up. Where do their motivation and determination come from? Let’s meet a couple of the young leaders who played a big role in this project.

Rahmawati（29）

Rahmawati is a leader of PerMaTa’s South Sulawesi branch.
She was diagnosed with leprosy at the age of 11 when she was in the fifth grade of elementary school. Her left leg became paralyzed and she spent three years in bed. She was eventually cured but stayed at home because she was ashamed of the scars left on her skin.

When she was 21, a branch of PerMaTa was established in the Gowa district of South Sulawesi and she began to participate in its work. In particular, she became interested in actions to educate school children and the community about leprosy and through her involvement she was able to open up to people around her. Rahmawati says that while leprosy prevented her from continuing her studies, she has been able to gain a lot of knowledge, experience and precious friendships through her activities with PerMaTa, and now she can openly tell people that she is a person affected by leprosy.

This project also demonstrated her positive spirit and leadership qualities. In one village she visited, she said the community leader had been surprised by her can-do attitude. But as she explains it: “I want to contribute to improving the lives of as many persons affected by leprosy as possible who are facing difficulty during the coronavirus pandemic; even a little support can help them to get through it. And I want to support those who, like me, have experienced stigma and discrimination as a result of leprosy.”

Kaharuddin（31）

Kaharuddin is currently working as a junior high school teacher and is a leader of PerMaTa South Sulawesi’s Jeneponto district branch. In 2007, while at high school, he developed leprosy and his symptoms worsened following graduation, covering his face and body with nodules.

At the time he had no knowledge of the disease and thought he must be suffering from a food allergy. An uncle who was worried about him took him to see a doctor in the neighborhood where he paid 200,000 rupiah for four months’ supply of multidrug therapy. (MDT, the drug treatment for leprosy that is distributed free around the world, is normally taken for between 6 to 12 months.) At this point, however, he still did not know for certain what his illness was.

But one day after he had started work as a teacher he heard about leprosy from a health center worker who had come to the school to give a health education lesson. When Kaharuddin mentioned that he had taken MDT, he was asked to visit the health center for a detailed examination, following which he was able to be properly treated for the disease. During treatment, his skin temporarily darkened because of the effect of one of the drugs he was taking (clofazimine) and he was sometimes teased by his friends. Even at this point, however, he remained upbeat because he still didn’t really know what leprosy was. After taking MDT for a year, he took a blood test and the result came back negative. He was cured and was left with no disability whatsoever.

In December 2012, the Jeneponto branch of Permata South Sulawesi was established. People recommended that he join and he was happy to do so. It was not until he joined PerMaTa that he finally learned in detail what kind of disease leprosy is and how it is transmitted.

At the health center, they had told him to take his medicine regularly but hadn’t told him much about the disease itself. This was because many people stop taking their medicine when they find out that what they have is leprosy. At first, Kaharuddin too was a littile uncomfortable , but those he met in PerMaTa encouraged him and this helped him to regain his confidence.

From his own experience, Kaharuddin learned how important it is to obtain correct information about leprosy to detect the symptoms quickly and begin treatment promptly. In his case, he counts himself extremely fortunate that even though his treatment was delayed because he didn’t initially get the right information, he didn’t end up with any disabilities. Since joining PerMaTa, he has helped people with signs of leprosy familiarize themselves with the disease and supports them so that they complete their treatment. It’s because he had the disease that he can offer encouragement and give hope and courage to those with leprosy.

In addition to the five districts where this project took place, leprosy still presents challenges in other parts of Indonesia. Because of what they have seen and experienced, PerMaTa members are able to offer some very important suggestions. We look forward to their further success in helping to resolve the problems that people affected by leprosy continue to face.

Project updates are also being posted on facebook of PerMaTa South Sulawesi and DTI.

Read our August 13 post for more about this project.

For more information about how we support COIVD-19 aid projects, click here.