It was in the 1950s and his family was not sure what was wrong with him, so Rauf continued to scratch and to bear the pain as well as he could.

“Only God and I knew how much it hurt… especially at night. I could not sleep because my joints were numb. It was exhausting.

“I bore the pain for almost two years before my mum finally brought me to see a doctor at a clinic,” he told FMT.

It was then that he found out he was suffering from leprosy.

Rauf believed he was infected by his grandfather. The doctor suggested that he go to the Sungai Buloh leprosy settlement for further treatment, but his parents were unable to send him there due to the family’s financial situation.

So Rauf lived with the disease in silence, going to school just like every other child. But the infection soon started to show on his skin, and his hands would become numb.

Some of his muscles became paralysed, causing his fingers to bend.

Some of his friends would ask him why his hand was different, but Rauf merely distanced himself from them.

“I lost my confidence to mingle with others. I told my mum that I wanted to go to Sungai Buloh, and it did not matter if anything happened to me there,” he said.

Left with no choice, his parents took him to the Sungai Buloh leprosy settlement to seek treatment. There, he slowly became better.

Today, Rauf is still recovering from the disease.

The 68-year-old is married and has five children. He is thankful that none of his family members is infected with the disease.

Rauf and another leprosy survivor, Philip Yong, were among those who shared their stories at the opening of the Valley of Hope Story Gallery in Sungai Buloh.

Yong, 66, was infected when he was three years old. But he managed to get early treatment and recovered within three to four years.

Even so, Yong recalled that it was a painful experience. He became paralysed and had to depend on a wheelchair to get around.

The Valley of Hope project was established by the Sungai Buloh Settlement Council in 2016 through crowdfunding.

Over 20 survivors have come forward to share their experiences.

The council hopes the project will enable the future generation to remember the settlement, which provided refuge to thousands of leprosy patients.

Project leader Tan Ean Nee said the idea for a story gallery came about when they were establishing the Sungai Buloh online museum in 2013.

“On the launch day of the website, a few residents brought their artefacts and shared the stories behind the items.

“What they shared was very touching. Their stories suddenly awoke the collective memories of the Sungai Buloh community.”

Tan said it had always been a dream to establish a story gallery to preserve the community’s legacy.

“If we do not expedite the preservation of their memories now, I worry their life history will be buried when they pass on.

“For the past few years, we have worked hard to interview the residents, document their life experiences, digitalise their old photos and important documents, and collect their artefacts to preserve the history of this settlement,” she said at the launch of the story gallery at the National Leprosy Control Centre in Sungai Buloh.

Tan said she hoped the leprosy settlement would be a national and world heritage site one day.

The Story Gallery is the first step towards achieving this, commemorating the strong spirit of the leprosy patients and the contributions to the Valley of Hope.

“In 2016, we launched a crowdfunding project called ‘You Are The Hero’ to generate funds for the construction of the Story Gallery.

“The leprosy survivors have come a long way and have been through a lot in life since the time of their segregation,” Tan said.

Among those who attended the launch on Sunday were Sungai Buloh Hospital director Dr Khalid Ibrahim, Department of National Heritage director-general and heritage commissioner Zainah Ibrahim, president of the Sungai Buloh Settlement Tan Hing, as well as residents of the settlement.

Leprosy is a chronic disease caused by a slow multiplying bacillus called Mycobacterium leprae. It mainly affects the skin and peripheral nerves.

It is transmitted via droplets from the nose and mouth during close and frequent contact with untreated people. However, the disease is curable with proper treatment.

In 2016, 206 new cases were reported, mostly migrants.

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