She is not only invited by United Nations to deliver a talk on her journey as a TB survivor at Netherlands in it’s upcoming conference on TB but she is also doing patient advocacy on different platforms in the country. She has also started her full time work now as a senior architect in one of the architect firm in Pune.
The young woman went through a trial by fire to see the light of day. A series of wrong treatments led to her condition going from bad to and she eventually developed XXDR-TB.
When she was diagnosed with the TB, Debashree had just graduate in architecture from Cummins College, Pune and had just joined a firm in Ahmedabad, Gujarat. Her failing health came at the cost of her not being able to continue her job.
Three years into her treatment, she was administered drugs such as Kanamycin and Capreomycin that led to her to permanent lose her ability to hear.
When asked about how her initial reaction, when she realised that she was diagnosed with TB, Lokhande said, “To be honest, I knew nothing about TB. With whatever energy I had left in me, I used to switch on my computer and read whatever information the Internet had to offer on TB. But it was like reading a completely unknown script of language.”
In Marathi, TB is called as ‘kshay’, which meant ‘the end’. Why should a disease have such a negative name? Some hundreds of years ago, people died of TB and the name made sense. Now, with the treatments available, TB patients can live long and fulfilling lives. It is time to change the name of the disease in Marathi.”
When questioned about what was the reaction from her friends, neighbours and relatives when they found that she was diagnosed with TB, she said, “There is a stigma associated with the disease, and so, many chose to no longer stay in touch with me.”
She added, “Many of my friends and relatives did not visit me anymore. Some just enquired over phone. Some regular visitors to our home suddenly stopped visiting us.”
But she also says that she has encountered positive experiences, recalling those moments, she said, “I was overwhelmed, when my boss came to meet me with his little son. I was also surprised by random donations from people who hated me, and even from relatives whom I had never met and from complete strangers.”
While explain on what kept her motivating, Lokhande said, “My family, they put in every ounce of whatever they had, for me. So, at times, when I thought of giving up, I felt I couldn’t leave them. I had to fight for them. They gave me everything.”
Lokhande further said, “Even my young sister, did a lot much for me. My father bought the most expensive cochlear implant, just so I could hear again. Their true love for me has been my motivation. I don’t believe in religion, but I believe that there is some power that created me and gave me all the strength I needed to fight back.”
She further added, “There were times, where I used to feel unlucky. However, now I feel, though the journey was difficult, TB chose me because I am a strong person and I could fight back. I don’t know from where I got the infection. Anyone can get the infection, regardless of whether you are a commoner or a celebrity. It is no fault of the patient.”
“I just have too many questions. When cancer is given so much of importance, why is TB not? Why is Bedaquiline (a drug used to treat active TB) not made available? Why are doctors still not aware about standard protocols and common side effects of TB drugs? Why was the health budget reduced this year? What about those TB patients who are shunned in rural areas and slums? ,” Lokhande said while analysing TB treatment in India.