公益財団法人笹川記念保健協力財団
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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

OPINION: Learning Experience

An Indonesian journalist accompanies the Goodwill Ambassador on a recent mission.

I am the daughter of a doctor. That should have equipped me with more knowledge of leprosy than I possessed.

In fact, I knew no more about leprosy than the average Indonesian—in other words, not very much at all—and my lack of knowledge made me fearful.

In my student days, I went to a cram school in central Tangerang, a city west of the capital, Jakarta. Traveling by angkot (a shared minivan), I would see lots of persons with leprosy begging on the street as we drove by.

I remember feeling afraid, worried that I could get infected. I wasn’t even within touching distance, but the fear was real. In the end, I asked my parents to send me to a cram school nearer home. What I didn’t do was ask my mother about the disease itself.

Since then, I hadn’t given leprosy much thought until I was assigned to cover a mission to Sulawesi by the WHO Goodwill Ambassador for Leprosy Elimination. I hadn’t been aware such an ambassador existed, and had never heard of Yohei Sasakawa.

PINK SOCKS

When we met, I was struck by the fact he was wearing bright pink socks. This fact intrigued me. When I finally got the chance to ask him about this, he said the bright pink color lifted his spirits because it symbolizes youthfulness for him.

When he spoke, he said something that changed my whole understanding of leprosy.

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Nilam (left) interviews a member of PerMaTa in Makassar

The first place we visited was a primary health center in Gowa, which forms part of Makassar in South Sulawesi. Elaborate preparations had been made for Mr. Sasakawa’s visit and he was warmly received, almost as if he were an old friend.

When it was his turn to speak, he said something that changed my whole understanding of leprosy. “I have met thousands of people affected by leprosy, and to this day I have never developed the disease.” I recalled my previous fears, and felt confused.

Later that morning, we visited a household where several members were undergoing treatment for leprosy. I watched Mr. Sasakawa kneel down and casually begin chatting with them, taking them by the hand and offering words of encouragement.

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The Goodwill Ambassador offering words of encouragement

Listening to what he said and seeing what he did made me realize that I had it all wrong about leprosy. What’s more, I believe most Indonesians have got it all wrong—about how contagious it is, and whether or not it is curable—and that our ignorance is responsible for the stigma that surrounds leprosy.

During the rest of the mission to South and Central Sulawesi, I sought to learn as much as I could about the disease, talking with patients under treatment and others who have been cured. Listening to their stories and the struggles they had faced was humbling.

Particularly inspiring were those who have become advocates for others facing the challenges of leprosy, helping them to access treatment and speaking out against discrimination. It was almost as if being a person affected by leprosy was a badge they wore proudly because their experiences have made them stronger.

Take the case of Rahma. She was diagnosed with leprosy when she was quite young. Her parents banished her from the house because they thought she was cursed. Later her engagement was broken off when her in-laws to be found out that she had once had leprosy.

But Rahma did not let the disease affect her further. She has since joined PerMatTa, an organization of people affected by leprosy, where she speaks out to spread awareness and dispel stigma.

VALUABLE JOURNEY

My assignment stopped being merely a work trip and became a valuable journey that taught me many wonderful things. Seeing Mr. Sasakawa in action, and witnessing his compassion and conviction, brought home to me that no matter who or where you are, you can make a difference if you decide to.

And after meeting and talking with members of PerMaTa, I learned that nothing can crush you, unless you let it. I have become passionate about sharing what I now know about leprosy—and for that I am grateful.

AUTHOR: Nilam Suri

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Nilam Suri is a reporter for the online news portal Liputan 6.