Swami’s story

Swami portraitSwami, 17, is a leader of a school health support group run by TB Alert’s partner, VMM.

He and his sister Vennela have recovered from TB but both are HIV positive. They are orphans, having lost their parents, who were also HIV positive, to TB. Swami and Vennela now live with their uncle, a rickshaw driver.

“Coming into contact with VMM has been a lifeline,” says Swami. “We receive nutritional support from them, which is a great help because my uncle does not earn a lot. We belong to our local VMM child support group, where we’ve learnt about keeping ourselves healthy, preventing the spread of TB to others, caring for those with TB or HIV, and first aid. So when Vennela started to cough and lose weight we knew that she had to go to a doctor quickly.

“I went with her to her appointments and made sure she took her medicine. And when I was ill and felt nauseous, she helped my uncle to prepare special meals and persuaded me to eat. We are healthy now and so grateful to VMM for educating us — it saved our lives.”

Swami found taking TB medication for six months on top of his daily HIV treatment gruelling, but the stigma from classmates and teachers at school was worse.  “First, my aunt decided that she would rather leave her husband than live with us. Then everyone at school, including the teachers, shunned us. The other children wouldn’t play with me and the staff made me eat my dinner away from the others. Both Vennela and I have found this very difficult.”

Swami is keen to raise awareness of TB and HIV in school because he doesn’t want other children to suffer the way he and his sister did. “I take this responsibility seriously, as it’s a chance to share my story and to educate students and teachers about TB and HIV, and prevent discrimination in schools. Last year I was also very proud to be selected to talk about my experiences and those of other young people with HIV, to the Director General of the National Aids Control Organisation.”

Swami hopes to become an accountant and earn enough money to support his sister and uncle. Despite all he has been through, he remians upbeat about the future. He knows that there is life and hope if TB can be diagnosed and treated immediately. “In the future I want to set up an organisation like VMM and support social services for children living with HIV and TB. I will be able to motivate the children to work hard at school and encourage them. I will say ‘look at me, I live with HIV and I have had TB too, but I have not let it hold me back.’”

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