The story of Rafael
At the age of 13, Rafael discovers that he has leprosy. From that moment on his life is turned upside down.
Rafael (16) hides his illness from the outside world because he is ashamed and afraid of hurtful comments. He is also afraid of what his friends will think of him. He withdraws and decides not to tell anyone. Only his parents know about his illness.
My friends were worried my spots were contagious
Rafael lives with his father and little sister in a village in North-Sulawesi, Indonesia. Like any teenager, he goes to school every day and meets with his friends. He has had strange spots on his arm for a while, but is not really worried. Until his neighbours convince his his father to visit the local health center. Here he was diagnosed with leprosy.
I was very sad when I learned that my son had leprosy.
Rafael really had no idea what kind of disease leprosy was and what the consequences would be. So he was not immediately worried. For Hani, Rafael’s father, the diagnosis hit hard. “I was very sad when I learned that my son had leprosy. Many people feel that persons affected by leprosy do not belong in society and that they should live elsewhere. Far from the community. I didn’t want to do that to my son,” Hani says emotionally.
Stigma and discrimination
Due to a lack of knowledge about leprosy and the prejudices it creates, leprosy patients such as Rafael are shunned and discriminated against. Rafael: “Once I understood what kind of disease leprosy is and what people think about it, I was very ashamed and didn’t want to see anyone anymore.” When Rafael finally told his friends what was wrong with him, exactly what he already feared happened. For fear of contamination, they no longer wanted to meet with him.
More awareness about leprosy
Now, 3 years later, the situation in his village has changed positively. Thanks to the Leprosy-friendly Villages programme of NLR and the Indonesian Ministry of Health, sensitisation meetings have been organised to increase awareness among community leaders and members, health staff and other stakeholder about leprosy. This reduces stigma and discrimination and helped for more timely diagnosis.
Meanwhile, Rafael is also doing well again. He has received medication and is completely healed. He also meets up with his friends again. “I am so happy that the people in my village now know more about leprosy. As a result, they are no longer afraid of being infected by me and I can go back to school and meet up with my friends ”, says a relieved Rafael.
