"I was diagnosed with multi-drug resistant (MDR) TB at the first test. I was resistant to three of the four drugs in the standard 4-drug kit prescribed, and my condition continued to worsen. "

Debshree Lokhande Architect, XXDR TB Survivor

I was diagnosed with multi-drug resistant (MDR) TB at the first test. I was resistant to three of the four drugs in the standard 4-drug kit prescribed, and my condition continued to worsen. Within just six months, X-rays revealed the severity of the situation. The entirety of my left lung was destroyed, and the other lung was infected as well, which my doctor did nothing to try to save.

I was able to fight TB bravely but it changed my life forever. The physical toll the disease took on my body began to affect my mental health as well. “The drugs also caused mood swings and affected my mental balance. These injections ultimately saved my life, but were excruciatingly painful. A dreaded side effect of the injections was a loss in speech and hearing, which made me feel even more isolated. My younger sister was the only one who managed to communicate with me, using sign language.

Everyday, I felt wracked with guilt and helplessness about things that were far out of my control. Because doctors failed to advise my family on how TB spreads at home, my younger sister also contracted the disease. However, because she was prescribed the right medication in time, she made a remarkably speedy recovery. As though my physical and mental fight against the illness and the side-effects of the medication was not difficult enough, I was also subjected to the social stigma that compounded TB.

Some of my friends avoided meeting me. So misguided are perceptions about TB, that there are still people who avoid me, even after I am fully recovered. The insensitivity and ignorance of my extended family and others exasperated my parents. Though my parents did everything they could, their efforts were often misguided because uninformed doctors and incorrect lab reports led them in the wrong direction. Three years of medication, and my condition only worsened.

Ready to put up one last fight, the family went to a doctor at Mumbai’s Hinduja Hospital. I was prescribed a new set of medications, including the drug Bedaquiline, a new experimental drug which I had managed to receive on compassionate grounds.

Today, I have completely recovered, but those taxing three years still have an impact on my life, and on my family. Caring for a daughter with TB, particularly paying for the cochlear implant that would correct my hearing loss, put a huge strain on the family.

I can hear again, and am able to work full-time now. I am an architect by profession. I am a committed, outspoken and fearless advocate sharing my story, so that people are more aware of the realities of the disease.