'Cursed' and left alone to die...

Some people still believe that leprosy is a curse. When Castro, a Leprosy Mission worker, found Alfredu, he had been left alone to die in a shack with pigs. His family were so terrified they wanted nothing to do with him. Castro was horrified when he saw Alfredu’s condition. He wrote this letter to let Australians know about the reality of leprosy for some people in Timor Leste.

Warning: Distressing details in this letter.

Dear Friend in Australia,

Greetings from Timor Leste. My name is Castro and I work with The Leprosy Mission over here.

I want to tell you a very sad story about Alfredu. His family says he got leprosy when he was a refugee in Indonesia in 1999. When he came back in 2001, he had leprosy.

His wife had passed away but his sons and daughters were still living at home. They put him away in a hut because his ulcers smelled so bad. But we cannot judge them because they did not understand leprosy. Alfredu’s family thought he was cursed so they left him alone to die. They did not know there was a cure.

I was so shocked by what I saw. I felt very sad. Alfredu was being treated like an animal. He was sharing a hut with pigs. He didn’t even have clothes. Rats had already finished eating his toes and his fingers. I have worked for The Leprosy Mission for a long time, but I have not seen anything as bad as this.

He didn’t have a toilet – his waste would just be on the ground in his hut. Also, where he lived is a cold place but his hut had holes in the walls. It was cold inside and he was just sleeping on cardboard boxes. He had no electricity.

We got Alfredu to hospital where he was being treated but he died soon after. Alfredu was 65 years old when he passed away. We did all we could to help. But it was too late.

We did contact tracing with Alfredu’s family to check if other family members also had leprosy. We visited his family house with the Ministry of Health’s Leprosy Control director as well as a government doctor.

We checked them all for signs and symptoms of leprosy, but no one else in his family had leprosy.

Alfredu’s story makes me see how important it is to speak up. To raise awareness of what leprosy is. So people know they don’t have to be afraid of their family members with leprosy.

It takes time to change people’s behaviour and thinking. We need to spend time explaining leprosy to people in communities so gradually their attitudes will change. We also need to search for other people affected by leprosy in remote parts of Timor Leste so they can get treatment early.

I urge you to please support us in our work. There will be many others
like Alfredu out there, being hidden by their families. So we need to find them. And we also need to work to reduce the discrimination faced by people affected by leprosy.

In Timor Leste, leprosy is a neglected disease – it is not a high priority of the government. The Leprosy Mission is the only international organisation supporting people affected by leprosy so we need your help to keep doing our work.

Thank you very much for your support of The Leprosy Mission. May God bless you.

Yours sincerely,