Fighting TB and taboo

World TB Day will be observed on March 24. Even today some villages in India are battling not just TB, but the stigma attached to it which is very common.

She may be 16, but Annu looks half her age. She is frail, pale, her chest bones are prominent and she has deep sunken eyes. For the last two years she has not seen any of her friends. She doesn’t go to school and is not even allowed to play with her three-year-old brother, Rishabh. All she does is “cable knitting” that her mother taught her during her school holidays earlier. Annu suffers from multi-drug resistant (MDR) TB and has been on heavy doses of medicine since October 2014.

Confined to one small room, Annu is desperately waiting for completion of her course of medicines for it would mean “freedom”. “Abhi nahi khel sakti, kuch din baad to khel sakenge bhai ke sath. Abhi to mein kuch nahi karti, bethi rehti hoon (I cannot play with my brother now, cannot do anything. I just keep sitting),” she said as tears fall down her face.

MDR-TB occurs when a person defaults on the treatment a number of times and the bacteria mutate to become resistant to one, two or all the medicines in the treatment. Unfortunately the stigma attached to tuberculosis is very common in India and especially the villages where not many realise how wrong this isolation of tuberculosis sufferers is. Annu is just another teen unfortunate enough to suffer from a disease like tuberculosis.

It was two years back when her condition started to steadily deteriorate after her two elder brothers fell ill three years ago and died due to an “unknown” ailment. During that period she developed a persistent cough, had high fever every evening and frequent night sweats. Her condition forced her to stay at home and rest. “She is banned from everything. She cannot play with anyone. People are scared to come here as they think they will catch the cough from her,” said Annu’s father in a sad voice.

The make their ends meet, the parents try to do everything so that Annu can be given fresh and the best food as unfortunately she is not eligible for any of the welfare schemes granted by the government. However, in their lonely fight against the deadly bacteria, Annu’s family is thankful to project Axshya conducted by the Union partners. Axshya which means “TB free” focuses on strengthening India’s TB control programme through advocacy, communication and social mobilisation. The counsellors not only visit their home on regular basis to make sure that she is well taken care of to prevent further infection within the family but also helping her continue her studies. “We have found a private donor who would help her get free education. From April this year she would be back in the company of books, said Deepak Mehto of project Axshya.

At a distance of 38-km from the national capital, this small village called West Ram Nagar in Sonepat is a hub for TB cases. With population of about 15,00,000 of Sonepat, in rural villages of the district, here TB incidence rate is alarming. However, like Annu there are many families of west Ram Nagar that are supported by project Axshya team.

Few miles away from West Ram Nagar is another village Dhatauli. With about 2,500 families, here small houses and big families are a norm.

So when 18-year-old Shabnam was diagnosed with TB, there was “nothing unusual”. Two years back Shabnam’s grandmother Lilawati was put on DOTS treatment. Her grandfather, 75, whose favourite pastime is hookah has just been diagnosed with TB. In fact “all three of them are the relapse cases. There is a cross-infection. We are vigilant about these kind of cases and continue to support them,” said Dr Sarabjit Chadha, project director, Axshya.

Despite the obvious symptoms, the disease wasn’t detected for a long time. Even as the family saw her coughing with persistent fever, the stigma and taboo was such that they were not agreeing for treatment and wanted to marry her off. However, the frequent visits by Axshya community volunteer Maihar Singh worked and Shabnam’s father agreed for the treatment.

After her treatment gets over Shabnam wants to go with her friends to school, which she had to drop out of two years back.

Close to Shabnam’s house lives another couple Rakhi (23) and Sonu (28). They got married in 2014. Before marriage both had taken medication for TB but didn’t disclose it to each other. Sonu’s cough was still persisting at the time of marriage, but he denied going through the diagnosis for the second time. After marriage the couple didn’t disclose to each other and after three months of marriage, when Axshya team visited their home during a household survey Rakhi came to know that Sonu had TB earlier. Both were diagnosed with TB again, Rakhi was pregnant at that time and delivered a baby in December 2015. Unfortunately, the baby died. Rakhi is continuing with the treatment and will complete her medicine course in March 2016. “The volunteer regularly visits them to ensure timely medication,” said Dr Sudhi, technical officer, team Axshya.

Project Axshya has seen many happy endings, but there are many who are struggling with TB and the adverse effects of poverty. Operation Axshya providers are working round-the-clock to help them regain their health and happiness.