Al Qadri contracted leprosy as a boy. Now he has a message for everyone.
|Spreading awareness: PerMaTa Vice Chairman Al Qadri seen here speaking to pupils of Limboto state elementary school in Gorontalo Province, Indonesia, in November.|
I was diagnosed with leprosy in 1978, when I was six years old. It began when the mother of a friend of mine noticed I had anesthetic patches around my knees that didn’t hurt when my friend pinched them. His mother went to speak with the school principal.
I didn’t know what they were talking about, but the next day he came to see my parents and told them that I needed to drop out of school temporarily. I remember thinking that the reason he gave didn’t really make sense. The principal said I was too young, but a few of my classmates were younger. My friend made fun of me because I had leprosy.
Since I was so young, I did not appreciate the impact on my family at the time. It was only after I grew up that I came to realize that my parents had suffered stigma and discrimination from their friends and relatives because of my disease.
Because I wasn’t going to school, I did not study. But, praise God, when I was 12, a teacher in my village kindly asked me to go back to school. I learned to read, but I could not write as my hands were badly clawed; I also had wounds on my feet.
I dropped out of school and worked as a cowherd looking after my parents’ cows until the problems with my hands and feet worsened. Until this point, I had not had received proper treatment.
Then, in 1989, a person affected by leprosy took me in and asked me to stay at his house while I received treatment. Initially I refused, as I had given up hope and wanted to end my life. But he confidently assured me that I would get better, so I finally decided to take regular medication. Eventually, after more than three years, including time spent in hospital, I was rehabilitated.
In the past, I would not have dared to talk about leprosy with other people. I tried to hide the fact I had had leprosy, even after being told I was cured. I had been stigmatized and did not want to go back to my village, where discrimination existed. Also, I wanted to protect my family’s honor, since I was aware that my family members would face discrimination and would be rejected for marriage on account of me, and I didn’t want them to suffer.
Despite this, I knew that my parents and my family still loved me. They visited me often when I was in hospital, especially my mother.
Since joining PerMaTa, I have learned a lot about human rights and about self-confidence. Until then, I was influenced by the negative image of leprosy as being the result of sin, or a curse.
I became more open minded and actively mixed with other people. I don’t want others to suffer due to leprosy in the way I did.
Nowadays, the problem is the lack of awareness. It is important for the whole community to know about leprosy and its impact. If we recognize the early signs, so much the better, because we can treat people before they develop disabilities.
My message is this: Brothers and sisters, if you find any patches on your skin, please visit the health center to be examined, the sooner the better so as to prevent disability—and it might make the treatment easier, too.
If you are diagnosed with leprosy, please take your medication regularly and follow the advice of your doctor or health worker. Keep your spirits up!
Please open your mind, open yourself to others and keep socializing. If you isolate yourself, you may find this can lead to more stress and could trigger leprosy reaction.
Remember, leprosy can be cured. Getting leprosy is not the end of everything. Take it from me.
Al Qadri is vice chairman of PerMaTa, an organization of persons affected by leprosy in Indonesia founded in 2007. It has 3,700 members and 29 branches in four provinces: South Sulawesi, East Java, East Nusa Tenggara and South Sumatra.