“I face stigma in my family due to my disease”

I was burnt at the age of 13 and after that incident people stopped talking to me due to my burn marks. A lot of people in the area do not speak to me. I rear sheep for a living.

Three months ago, I went to a nearby health center for four days after I started having symptoms of TB but the lab technician was not present so I wasn’t getting tested. Then a friend of mine, who had attended a community meeting organized by an NGO, became aware of my symptoms and referred me to a REACH volunteer. I went for a sputum test following which I was diagnosed with TB.  I have pain in my chest and difficulty in breathing but I am taking my medicines regularly.

I face stigma in my house regularly due to my disease. My family constitutes of my father, my step-mother, my two brothers and myself. I am not allowed to sleep in my own house because my step-mother fears that the rest of the family will get infected. I go in the evenings to sleep in a small abandoned hut along with my aunt.

But the good thing is that now I am getting nutritional support and my weight has increased from 38 to 43 kgs. I am hopeful that I will get well soon. – Kesavdani, TB Patient

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This story is part of our series called ‘Voices of TB Heroes’ that features TB survivors and community volunteers who’ve impacted the lives of those affected by TB.

 According to the Global TB Report for 2016 that was released last month, India continues to bear the world’s highest burden of TB, with 2.8 million people affected by the disease last year. Despite being curable, TB kills over 1000 people every day in India.

 At the heart of India’s battle against TB are those directly affected by the disease. It is their stories that we need to hear, their struggles and battles we need to support and their victories we must celebrate. Please read and share these stories widely.

“Children are our future and we need more TB awareness initiatives for them.”

“I was thrilled when a REACH team member approached me to join the pharmacy initiative. Poor people cannot afford treatment and do not have the right knowledge about Tuberculosis. It gives me immense satisfaction to do this work for the poor. In this area, most of the people are poor. When I find a person with TB symptoms, I counsel them and ask them to meet Shanthi from REACH. I have referred over 30 people to REACH in the last year and I have been associated with REACH for the past four years.

Right now I am providing TB medicines to four patients under direct observation. If a patient is alcoholic, I counsel them and push them to quit drinking and to take their medicines. I tell these patients that Tuberculosis is curable and that they can rebuild their lives.

The one thing that bothers me the most is that there are no awareness initiatives for children. Children are our future and if they have the right knowledge, we can successfully curb TB.” – S. Mani, Pharmacist

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This story is part of our series called ‘Voices of TB Heroes’ that features TB survivors and community volunteers who’ve impacted the lives of those affected by TB.

 According to the Global TB Report for 2016 that was released last month, India continues to bear the world’s highest burden of TB, with 2.8 million people affected by the disease last year. Despite being curable, TB kills over 1000 people every day in India.

At the heart of India’s battle against TB are those directly affected by the disease. It is their stories that we need to hear, their struggles and battles we need to support and their victories we must celebrate. Please read and share these stories widely.

“My mission – to counsel TB patients with depression”

A lot of TB patients become depressed during treatment and even start having suicidal thoughts. My mission is to counsel such patients. In one such incident, a 26-year-old pregnant woman Rupa (name changed) was suffering from TB. She confided in me and told me she had suicidal thoughts because of lack of family support. I counselled Rupa and met her husband and mother-in-law. I educated them on TB and convinced them that with their support, Rupa could be cured and would be able to lead a normal life again. After a lot of efforts, I was able to convince the family to support the woman. Within two months, there was a drastic improvement in her condition. Her family later came and thanked me for my support. It was a huge motivation for me.

Another patient, 25-year-old Amit (name changed), lost all hope when he had a relapse four years after he had completed his treatment for TB. He stopped taking medicines and wasn’t coming to the center.

His mother came and cried in front of the doctor. I made it my mission to support her. I chased Amit for eight months and I had to constantly visit him at his home and bring him to the clinic. It was a struggle to get him to complete his treatment. But I was overjoyed when he was finally cured.

I have been a DOT provider for over 20 patients and have referred over 30 patients. I have to make house visits for people who are unable to come to the clinic.

My mother-in-law and husband have been my backbone. They give priority to my work over my husband’s job or the household chores.

I have only one philosophy. What are we going to take from this world? I have sufficient means to live a good life. I don’t do this for money. I do this work because it gives me happiness and satisfaction. I feel special when people recognize me on the streets and bless me.” – Rameeza, Clinic DOTS Provider

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Rameeza’s story is part of our series called ‘Voices of TB Heroes’ that features TB survivors and community volunteers who’ve impacted the lives of those affected by TB.

 According to the Global TB Report for 2016 that was released last month, India continues to bear the world’s highest burden of TB, with 2.8 million people affected by the disease last year. Despite being curable, TB kills over 1000 people every day in India.

At the heart of India’s battle against TB are those directly affected by the disease. It is their stories that we need to hear, their struggles and battles we need to support and their victories we must celebrate. Please read and share these stories widely.

 

 

“TB is challenging and complex to work on..”

“In Mumbai, we started working on TB when there was a big issue surrounding drug resistant TB after a few people died. Since then, I have been working on TB. It is challenging and it has many aspects so I like working on something which is so complex. I have worked on TB for a while so it was natural for me to apply for a fellowship on TB. The fellowship gave me the freedom to travel and focus on a specific topic.

I looked at the gender aspect of TB during my Fellowship. It was interesting because you have to pursue a certain aspect of a story. It was actually tough to establish what I did as not many people think of gender so they had to dig their memory and try to remember details. They don’t think of women as very crucial to the TB program in a sense that there are not many women in the program itself. They aren’t specifically looking for women in the program. That’s why I spoke of active case finding and similar aspects because it is crucial to bring women in the scenario. There is not much written on women and TB so I chose it. There are very few studies on it too. Getting patients was the biggest challenge. You have to really hunt for stories. You have to do a lot of research. Even the people who are working in the field don’t think of it as a gender problem.

There is a lot of social stigma attached to TB. Even when I was in the field, I met a woman who had TB and someone met me outside and asked me if she had HIV. It has the same kind of stigma, which is related to HIV. Nutrition is one of the things that has to be brought immediate attention too. People haven’t had proper food in a long time. They haven’t had milk in years. How are they going to cure themselves? Also, nobody is looking at the sputum and we are missing out half the diagnosis. We need to look for cases actively. I recently spoke to someone who was telling me there is no treatment for latent TB. The challenge now is also starting daily dose for TB patients. We have to implement that all over India.” – Menaka Rao, Journalist and National Media Fellow, 2015

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This story is part of our series called ‘Voices of TB Heroes’ that features TB survivors and community volunteers who’ve impacted the lives of those affected by TB. 

 According to the Global TB Report for 2016 that was released last month, India continues to bear the world’s highest burden of TB, with 2.8 million people affected by the disease last year. Despite being curable, TB kills over 1000 people every day in India.

At the heart of India’s battle against TB are those directly affected by the disease. It is their stories that we need to hear, their struggles and battles we need to support and their victories we must celebrate. Please read and share these stories widely.

“Somebody did it for me, so it is my duty to do it for others.”

“Someone close to me was diagnosed with Tuberculosis in 2013 and I used to take them to CSI Rainy DOTS Centre for treatment. At around the same time in 2013, I was introduced to Shanthi, who was working with REACH, when she had come for an awareness program in our locality. I became very interested in the program and started referring anyone who had symptoms of TB to REACH. Due to my relative’s illness, I became aware of DOTS treatment and thought of becoming a provider in my area.

“I was diagnosed with TB and HIV but I wasn’t scared”

“I had TB symptoms for the first time four years ago when I started coughing incessantly, lost my appetite and was exhausted all the time. I went to see a government doctor in his private clinic, who initially gave me regular medication. But when there was no improvement in my condition, I was sent for an X-Ray. The doctor referred me to a primary healthcare center after I was diagnosed with TB. I wasn’t scared at all because my doctor assured me that I could be cured. I took medicines regularly for six months and was cured but after three months of getting cured, I had a relapse. At this time I also had a test for HIV and was declared positive.

“I have TB and Diabetes but I am leading a normal life.”

I used to sell fruits before I was diagnosed with TB. I live with my wife and all my children are married and live separately with their families. After getting TB, my health started deteriorating so I couldn’t work as a fruit seller anymore. I was sad about my condition. The private doctor I was visiting referred me to Lakshmi, REACH Field Officer.

Lakshmi was giving me Intensive Phase treatment (medicines for the first two months) till July this year and subsequently found me a neighboring pharmacist, who became my DOTS provider. I was not working at all during the initial months and had no means of income. I haven’t told my relatives and neighbors about my condition because I fear they will isolate me and never talk to me again.

“Through all of this, my wife has been my constant support and always accompanies me when I go to take medicines.”

I also have diabetes and I am taking medicines for that as well. I am leading a normal life now and I have taken up the job of a security guard close to my home. Through all of this, my wife has been my constant support and always accompanies me when I go to take medicines. Being able to access my treatment at a pharmacy has really helped, since it is close to my house and I don’t have to go far to take my medicines.” – Chellan, TB Survivor

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Mr. Chellan is a fruit seller in Triplicane in Chennai. This story is part of the new series called ‘Voices of TB Heroes’ that features TB survivors and community volunteers who’ve impacted the lives of those affected by TB. 

According to the Global TB Report for 2016 that was released last month, India continues to bear the world’s highest burden of TB, with 2.8 million people affected by the disease last year. Despite being curable, TB kills over 1000 people every day in India.

At the heart of India’s battle against TB are those directly affected by the disease. It is their stories that we need to hear, their struggles and battles we need to support and their victories we must celebrate. Please read and share these stories widely.

 

“I am happy to be able to work again”

“My father died of Tuberculosis 10 years ago. So, when I was diagnosed with TB, I was sure I would die too. I was depressed and had no hope left. I was physically tired all the time and stopped coming to work. My mother was very worried about me. My wife motivated me to take healthy diet and medicines and she was my emotional support.

At the same time, Sisters of Mary Immaculate (SMI) got in touch with me and gave me hope. They made me believe that I could be cured. It’s because of SMI that I am healthy and living. Before that I had been admitted to so many hospitals but in vain. But later, SMI team counseled me and provided me DOTS treatment. Now I am free of the disease and am able to work again.

If I find anybody with two weeks of cough, I take them for sputum test even if that means taking leave from work.

I am happy that I am able to come here and work as a healthy person as I like working.

If I find anybody with two weeks of cough, I take them for sputum test even if that means taking leave from work. My family is referring a lot of people with symptoms and I have referred two people as well. I will be with them till the end of their treatment and prioritize them over my work.” – Suresh, TB Survivor

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Mr Suresh sells vegetables at the Koyembedu market in Chennai. REACH implements Project Axshya through Sisters of Mary Immaculate (SMI) in Tiruvallur Distrcict, Tamil Nadu.

This story is part of the new series called ‘Voices of TB Heroes’ that features TB survivors and community volunteers who’ve impacted the lives of those affected by TB.

 According to the Global TB Report for 2016 that was released last month, India continues to bear the world’s highest burden of TB, with 2.8 million people affected by the disease last year. Despite being curable, TB kills over 1000 people every day in India.

 At the heart of India’s battle against TB are those directly affected by the disease. It is their stories that we need to hear, their struggles and battles we need to support and their victories we must celebrate. Please read and share these stories widely.

“When my husband got Tuberculosis, I had no idea what it was”

“When my husband got Tuberculosis, I had no idea what it was. My husband was an alcoholic and wasn’t concerned about me and our family. He didn’t take his medicines regularly. During the time of Chennai floods, I got a call from the DMC that my husband wasn’t taking regular treatment. I tried to convince him but eventually gave up. I was working as a house maid at that time. Someone from REACH came to visit us to follow-up on my husband’s treatment. During one of the visits, he told my mother that they were looking for a volunteer to work with REACH. My mother referred me as I have seen the disease up close.

“TB is nothing to be afraid of…”

“I was a smoker at the time I was diagnosed with TB two years ago. The doctor told me I was even more at risk due to my habit of smoking. I was miserable because I couldn’t even hug or kiss my children when I wanted to.

I wanted to be healthy. In fact, even before I got TB, I was scared of going near my children because I used to smell of cigarettes all the time and it wasn’t healthy for my children. So, after starting treatment I quit smoking.