KEEPING IN TOUCH

61800 537 767 • 37-39 Ellingworth Parade, Box Hill VIC 3128 • tlmaust@leprosymission.org.au

nerve damage. Anandaban hospital staff admitted Rangaraj for 2 months of treatment. He was also started on 24-months of Multi-Drug Therapy that would cure him of leprosy. Rangaraj returned to his village and ultimately remarried. Now, he and his wife Bimala, have two healthy children: a 10-year-old son, Suraj, and an 8-year-old daughter, Samjhana.

When people in his community found out that he had leprosy, they started treating him differently. They thought he deserved the disease. His relatives avoided him altogether.

“ Thank you very, very much for supporting people affected by leprosy like me."

These attitudes have changed because of the Hatia Self Help Group and your support. The group’s efforts to raise awareness, through street drama, has helped the community understand that leprosy is curable. His village now knows about leprosy and there is no longer any discrimination. The Hatia Self Help Group are now working on a new business initiative to produce leaf-pressed plates.

AROUND 18 YE ARS AGO Rangaraj developed unusual nodules on his face and leg. He didn’t know what was wrong. A gnawing concern compelled him to make the difficult journey across the mountains. A public hospital in Kathmandu recognised his signs as being leprosy. Upon this diagnosis, his wife left him because she feared she would contract leprosy. Medical staff at that hospital referred him to Anandaban hospital for treatment. When he arrived, Rangaraj was depressed and scared. There were patients there who had clawed hands and amputations as a result of leprosy. He wanted to run away. He was terrified that the same thing would happen to him. But through The Leprosy Mission's Hatia Self Help Group, Rangaraj learned that leprosy is caused by a bacteria and is curable, that disabilities are preventable, and how important it is to treat leprosy early.

Rangaraj had a common complication of leprosy called Reaction. Reaction is an episode of inflammation that can result in extensive

"Even my own relatives refused to come near me"

You can help support Rangaraj's new initiative online at leprosymission.org.au

WE RECENTLY HAD AN INTERESTING conversation with a supporter about the words that we use to talk about leprosy. She was referring to a movement that tries to identify and challenge the ways that our language harms people. She reminded us of the importance of affirming people’s dignity in everything we say. It’s a matter of justice.

A powerful example of this is rejecting the word “leper”. Unfortunately many people still use this degrading word. It shouldn't ever be used. It’s essentially degrading because it defines someone by a disease—not as a person. This is why we’re committed to saying "a person affected by leprosy", even if it seems clunky at times. This "people-first" language isn’t just used for people affected by leprosy. It applies to other conditions too. It has a very wide use across modern health practices and literature: the term “diabetic” has largely been replaced by “a person with diabetes”, for example.

Unfortunately it’s common for Bible translations to still use this degrading term for someone affected by leprosy. There’s no reason why this word should still be in use

today. It’s either an oversight of a modern translator or a translation from a time where the dignity of people affected by leprosy wasn’t properly considered. There are some translations that don’t use this word. If those aren’t available to you, you can swap the word out for “person affected by leprosy” whenever you’re reading. Regrettably, leprosy is also widely used as a metaphor for sin. This is a greatly unjust association. It implies that people bring the disease upon themselves and it grounds the stigma of leprosy in religious beliefs. People don’t bring leprosy upon themselves. People get leprosy from bacteria, not any form of sin.

There was an academic debate to change the name of leprosy during the 1960s and 1970s. Various names were argued for, including Hansen’s Disease, Hanseniasis and Numbing Disease. But there wasn't a universal acceptance of these terms, and people disagreed that it should change at all.

You may have heard people refer to leprosy as “Hansen’s Disease”. It’s a preference for some people and still commonly used today, but it means the same thing. It was

Just words? Affirming people’s dignity in everything we say.

When Seetha told her husband she had leprosy, he told her to leave and take their children

introduced to honour the ground-breaking work of Norwegian physician Gerhard Armauer Hansen. He was the first person to identify the bacteria responsible for leprosy in 1873. A tremendous medical leap towards a cure, this discovery also helped dispel the superstition that sin causes leprosy. In the last fifty years or so there has been a decline of diseases being named after their modern discoverer. Down’s Syndrome is now known as Down Syndrome, for example. These changes are being made to avoid the suggestion that its modern discoverer had the disease or somehow owns the disease. Although it's okay for people to use "Hansen's Disease", avoiding it altogether does avoid these suggestions. The World Health Organisation continues to use the word leprosy today. Most leprosy and neglected tropical disease organisations also continue that use.

You can help people affected by leprosy overcome stigma by giving counselling as a Gift of Love. You can also help reduce stigma by supporting Self Help Groups to teach their communities about the bacterial cause of leprosy. Call 1800 537 767 now.

The whole Ramil family, from Nepal, has experienced stigma | Photo by Tom Bradley

It's important that we all do our part to dismantle discrimination and protect people’s dignity. Simply by being careful how you speak, or by challenging unjust language and metaphors, you can help people affected by leprosy.

Stigma is one of the key obstacles to leprosy being defeated. Stigma can disempower people, hinder their treatment, further risk complications, and trap them in unemployment and poverty. Your projects are committed to addressing stigma. It's an essential point in The Leprosy Mission's global strategy to defeat leprosy. You can help these projects make a life-changing impact on people affected by leprosy by giving today.

Simply by being careful how you speak, or by challenging unjust language and metaphors, you can help people affected by leprosy.

Join Lisa in a life-transforming experience for you and people affected by leprosy. Find out more at leprosymission.org.au/trek17

JOIN LISA on the adventure of a lifetime! Lisa is one of the adventurous trekkers who will be discovering the Himalayas and helping people affected by leprosy.

She works as a casual Customer Services Officer at The Leprosy Mission Australia, helping supporters with their donations. She said that, apart from the friendly workplace, she loves working for a great cause: "Many people think leprosy is gone. But I think it's important for people to know that leprosy is still around."

Lisa has participated in fundraising challenges before. In October last year she ran a marathon to raise funds for people affected by leprosy. Earlier this year she participated in the Trailwalker—a 100km walk for charity. She admits she was a little daunted by the Trek to Defeat Leprosy challenge. In the past, fundraising has been difficult, but since registering this month she's already had lots of support from the Inspired Adventures team. "I've never had that before", she said, "they've inspired me to think about other ways I can raise funds. I'll be enlisting my friends and family to help me."

Together we can experience Nepal and help transform lives

Lisa is looking forward to seeing the difference that you are making on the lives of people affected by leprosy. She's also looking forward to seeing the spectacular Annapurna scenery—especially the sunrise on Day 8. Lisa has never been to Nepal and said it was a little bit scary. "But I see it as a once in a lifetime opportunity, in the safety of a group, to discover Nepal. And I feel this is something that God wants me to do for people affected by leprosy."

Funds raised in this challenge will be helping to improve the social, material and health-related well-being of people affected by leprosy and disability, as well as other marginalised people, from selected communities in Nepal.

Join Lisa and immerse yourself in Nepal’s Annapurna region; discover bustling Kathmandu, the beating heart of Nepal; trek amongst the highest mountains in the world; meet people in the Self-Help Groups you support; and raise vital funds for The Leprosy Mission Australia to support those living with leprosy in Nepal.