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“Want To Ensure That No Patient Is Discriminated Against Again”: Story Of A TB Survivor

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Photo: JEET/Vishakhapatnam, Andhra Pradesh, India

Boddeti Lakshmi (pictured above), is a TB survivor fighting against the stigma of the disease.

48-year-old Boddeti Lakshmi, who hails from Vishakhapatnam, has recently completed her treatment of tuberculosis (TB). It all began in 2019 with a severe cough. At that time, Boddeti was nursing her husband, who has been suffering from a stroke, for the last four years. A responsible homemaker and mother of two adults, Boddeti tried several home-based remedies to ward off her cough. She even sourced medicines from a nearby chemist, but she found no respite. Within a span of five months, Boddeti’s condition worsened. She began losing weight and appearing weak and pale.

It was then that she sought medical attention and visited a private clinic, in her vicinity. The doctor conducted a general check-up and prescribed her cough medicines for a period of 15 days. By the beginning of 2020 and no improvement in sight, Boddeti felt lost and distressed and decided to consult yet another general physician – Dr. Girivara at Pavani Medical Centre. By now, Boddeti had been suffering for eight months.

Boddeti’s Fight With Tuberculosis

Immediately, Dr. Girivara referred Boddeti to Joint Effort for Elimination of Tuberculosis (JEET). The JEET staff went to work and visited Boddeti at her home, to help her manage her symptoms and illness. The hub agent collected her sputum sample and sent it through Sample Collection Transporter (SCT) for testing via, CBNAAT (cartridge-based nucleic acid amplification). CBNAAT is an automated cartridge-based molecular technique that not only detects TB but also rifampicin resistance (drug resistance), within two hours.

And finally, Boddeti was diagnosed with TB. The results also revealed that she was hypertensive, and her blood sugar levels were at an all-time high- both of which are major risk factors to contracting TB. Boddeti’s stress knew no bounds when she learned of her diagnosis. She became anxious and worried.

It was with the help of JEET staff that Boddeti was able to overcome the initial shock of her diagnosis and the resolve to see things through, set in. “I was immediately initiated on treatment, but my road to recovery was riddled with severe side effects.” TB treatment side effects, manifest differently for different people- for some those may be mild, but for some very intense. Boddeti suffered from, nausea, vomiting, headache, and pain, and tingling in the feet. The side effects began taking a toll on Boddeti’s mental and physical well-being. Most often, side effects act as deterrents to TB treatment completion and hence recovery.

An interrupted TB treatment can lead to drug resistance, which is an even more dangerous form of TB and hampers complete cure and recovery. Boddeti was counseled by the JEET Treatment Coordinator (TC) and made aware of the consequences of leaving her TB treatment mid-way. She began making small changes to her life, to deal with the treatment and began focusing on recovery. And gradually, with the help of JEET’s treatment coordinator (TC) and regular intake of TB medicines along with a nutritious diet, Boddeti began showing signs of improvement.

Women And The Stigma Of A TB Diagnosis

Boddeti’s journey with TB treatment, cure, and recovery was not easy. As if the impact of side effects wasn’t enough, Boddeti’s two children, who are married and settled, began neglecting their mother. Not only was she abandoned by her own children, her community too ostracized her. This is hardly surprising. The stigma of TB continues to remain a critical and yet neglected challenge in India. Irrespective of economic and social backgrounds, literacy levels, or awareness, most TB patients choose to remain silent about their disease to extended family, friends, and their communities. TB is accompanied by a sense of shame, rampant discrimination, neglect, abandonment, and loss of livelihood.

In particular, the stigma of TB affects women disproportionately taking twice the toll on them as compared to men. Women continue to hide their disease due to fear of social ostracization, discrimination, and abandonment. But not Boddeti. She was open about her diagnosis to her community and family. She braved all criticism and takes all precautions to ensure that she doesn’t infect anyone else in her vicinity. She maintains social distance, disinfects her household frequently, uses hanker-chief while coughing, and uses a mask whenever she steps out.

While today Boddeti is availing free TB drugs from the government facility, she has demonstrated unwavering willpower. “If God has decided to give me a long life, I will definitely help other TB patients to fight their difficulties, I have gone through that phase, and I understand the pain, very well. I want to ensure that no TB patient is ever discriminated against. It is important to fight the stigma of TB and not the TB patient.

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Find out more about her campaign here.

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