Stories Archive

Aisha’s story

Susheela_TAP_2014-2porTB Alert’s campaigning success in Andhra Pradesh, India, is helping keep children like Aisha healthy and free of TB.

Aisha’s mother Susheela grew up in poverty, and had to leave school as a child to take care of her younger sisters. Susheela left home when she married, but her husband died when Aisha was just two years old. Facing destitution, the family moved back with Susheela’s parents, who could barely make ends meet themselves.

TB is a disease of poverty and Susheela is now suffering from TB for she felt ashamed to tell anyone about her illness due to stigma. But a local community health worker trained by TB Alert’s project TB Advocacy Programme (TAP) is supporting her through her treatment, and Susheela now talks openly about her TB.

To prevent Aisha from catching TB from hermother, she is being given a form of preventive treatment. Because a good diet and strong immune system are key to the treatment’s success, workers from TAP had campaigned at state level for children receiving such treatment to be given a double ration of the nutritional supplement provided to all children under six.

The ‘double ration’ was approved by the state government in 2012 – meaning that now twice a week Susheela receives plenty of rice, dhal, oil and eggs to help keep Aisha well.

“In our economic situation, we wouldn’t have been able to give her this much food to cope with her medicine. This has made her healthier and more energetic,” says a smiling Susheela.

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Sabine’s story

Sabine-2‘Health buddy’ Sabine Jaulim is working in her local community to raise awareness of TB and battle stigma and myths surrounding the illness.

Sabine is one of a ten-strong team of health buddies, which the Redbridge Council for Voluntary Services has developed in partnership with TB Alert.

The health buddies speak a range of community languages like Hindi, Urdu, Punjabi, Gujarati, Tamil and Arabic. They conduct TB awareness sessions in groups as well as one-to-one at various venues including community groups, libraries, mosques, temples and churches.

Sabine is originally from Mauritius, and speaks English, French, Creole and some Urdu. “I enjoy meeting new people, so I thought that being a health buddy would be an ideal way to use my people skills, while delivering an important health message,” she says. After training by TB Alert, Sabine started running awareness sessions in her community.

“One of the biggest challenges is convincing people that the myths about TB simply aren’t true,” she says. “People really believe you can catch TB through spitting or sharing cutlery. Also, they don’t realise that TB is curable or that treatment is free for everyone. But it’s very rewarding to think that because of the work I’ve done, someone may go along to their GP and get tested for TB, possibly saving their life,” she says.

So far, the Health Buddies have reached out to more than 1500 local residents through one-to-one and group sessions. In addition many more people have received messages on TB signs, symptoms, prevention and treatment through mediums like newsletters for the voluntary groups, local newspapers and community radio.

Download the Redbridge TB Awareness Pilot report



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Selina’s story

Selina_FHT_KateteIf you met Selina Phiri today, you’d find it hard to believe that just three years ago, this young woman’s life was completely shattered. Happily married with two healthy children, she spends her days tending the maize and pumpkins in her field in a small village in Zambia’s Eastern Province.

But when expecting her first baby, Selina was diagnosed with TB and HIV at the antenatal clinic. Accused of being unfaithful by her husband, he divorced her shortly after. “I really wished I was dead,” says Selina. “The shame was unbearable.”

When volunteer support workers from TB Alert’s COTHAZ project met Selina on their regular door to door visits, she was ill and alone, fearing what the future would bring for her unborn child. The support workers got to know Selina and her story, and met with her regularly to talk through her concerns and encourage her to stay on TB treatment

Selina’s life has since turned around. She was cured of TB, her baby was born HIV negative and she’s now remarried with another baby. Selina and her husband are both taking antiretrovirals to stay healthy.

Selina now wants to give something back, and is encouraging women in her position not to give up on life. “TB and HIV haven’t been a death sentence for me,” says Selina. “Rather, they’ve given me an opportunity to share my experience with others so they can take responsibility for their lives.”

A role mode in her village today, Selina is looking forward to training as a support worker herself.

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Medson’s story

Medson-webWhen Malawian farmer Medson Sakala was diagnosed with TB just two years after finding out he was HIV positive, he faced widespread stigma and discrimination.

“I found myself in many difficult situations,” says Medson. ” For example, my wife’s family told her wife not to eat with me, as they thought I could spread TB or HIV to her by sharing meals.

“Eventually I convinced my family that stigma was counter productive and that there was no way they could contract TB or HIV by sharing meals with me. Later on my kids and my wife started joining me on the table and from that time up to now we live positively.”

After being diagnosed with TB, Medson took the prescribed drugs and was successfully cured of the illness. He also started anti-retroviral drugs around that time, which he is still taking. He’s feeling better these days and is able to once again grow vegetables in his garden, which he exchanges for maize.

TB Alert’s JournAIDS project is using mass media to raise awareness of TB in Malawi, helping get people into treatment quicker and tackling the stigma that Medson faced.


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Venkata’s story

Venkata Swami knows his local community well. As the village chemist, he’s the one they turn to first for advice and medicine when they are feeling unwell. Ventaka mangages Shivani Medicals pharmacy in Adilabad district, Telangana, India.

Chemist---As-DOTS-Provider1These days when a patient comes in for cough medicines, Venkata takes the time to carefully ask them about their symptoms. If he suspects they may have the symptoms of TB, he will refer them on to the nearest clinic to be tested for the disease.

Venkata has been part of the PRATAM project for the past year, and has been trained in TB symptoms and the referral process. Now he feels confident in recognising the potential signs of TB, and knows how to motivate patients to seek help.

Venkata’s help has made a massive difference to 18-year-old Sreenivas. Having had to drop out of his university course as a result of frequent illness, Sreenivas visited Venkata at his pharmacy last year to get medicines for a recurring cough. Recognising the symptoms of TB, Venkata referred Sreenivas for testing, and his assistant accompanied him to the nearest clinic, where he was diagnosed with TB.

Now Sreenivas has been on directly observed treatment (DOT) for several months with Venkata, he is even feeling well enough to resume his studies, and stops in at Venkata’s shop for his tablets before getting the bus to university.

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Teaching TB in a game

Snakes and ladders is helping children in Andhra Pradesh learn vital health messages about TB and HIV.

TB Alert’s partner VMM, which manages the TAP project, developed a special version of the game for use in Children’s Clubs. Children who play the game move up the ladders when they make positive health choices and down the ladders when they do not. It’s a simple yet fun way of getting health messages across.

Children are given a copy of the game to take to their home or school – which they can use to teach others about TB-HIV and to reinforce the messages that they have learned.

The resource received a positive review in The Hindu, one of India’s most popular newspapers. Read the review on The Hindu website.
TB snakes and ladders board

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Kamitondo Clinic

Kamitondo-clinicThe Kamitondo Clinic can be found in Kitwe, in the Copperbelt District of Zambia. It is a busy, frequently congested, health centre providing services for both TB and HIV. The clinic’s clients include pregnant women who are receiving anti-retroviral therapy to prevent them passing on HIV to their unborn child.

In 2012, COTHAZ partner CINDI looked into conditions at the clinic and found it to be s a hotspot of TB infection for people living with HIV, as infection control guidelines were not being followed. CINDI met with the district health office, neighbourhood health committee and clinical staff to  discuss their findings and agree what steps should be taken.

As a result, two areas have been set aside in the clinic to separate TB patients  from those seeking treatment for HIV, meaning HIV patients have less chance of catching TB. The local council has also agreed to help fund a shelter to cut the risk of transmission even further.

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Swami’s story

Swami portraitSwami, 17, is a leader of a school health support group run by TB Alert’s partner, VMM.

He and his sister Vennela have recovered from TB but both are HIV positive. They are orphans, having lost their parents, who were also HIV positive, to TB. Swami and Vennela now live with their uncle, a rickshaw driver.

“Coming into contact with VMM has been a lifeline,” says Swami. “We receive nutritional support from them, which is a great help because my uncle does not earn a lot. We belong to our local VMM child support group, where we’ve learnt about keeping ourselves healthy, preventing the spread of TB to others, caring for those with TB or HIV, and first aid. So when Vennela started to cough and lose weight we knew that she had to go to a doctor quickly.

“I went with her to her appointments and made sure she took her medicine. And when I was ill and felt nauseous, she helped my uncle to prepare special meals and persuaded me to eat. We are healthy now and so grateful to VMM for educating us — it saved our lives.”

Swami found taking TB medication for six months on top of his daily HIV treatment gruelling, but the stigma from classmates and teachers at school was worse.  “First, my aunt decided that she would rather leave her husband than live with us. Then everyone at school, including the teachers, shunned us. The other children wouldn’t play with me and the staff made me eat my dinner away from the others. Both Vennela and I have found this very difficult.”

Swami is keen to raise awareness of TB and HIV in school because he doesn’t want other children to suffer the way he and his sister did. “I take this responsibility seriously, as it’s a chance to share my story and to educate students and teachers about TB and HIV, and prevent discrimination in schools. Last year I was also very proud to be selected to talk about my experiences and those of other young people with HIV, to the Director General of the National Aids Control Organisation.”

Swami hopes to become an accountant and earn enough money to support his sister and uncle. Despite all he has been through, he remians upbeat about the future. He knows that there is life and hope if TB can be diagnosed and treated immediately. “In the future I want to set up an organisation like VMM and support social services for children living with HIV and TB. I will be able to motivate the children to work hard at school and encourage them. I will say ‘look at me, I live with HIV and I have had TB too, but I have not let it hold me back.’”

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Louise’s story

LouiseWhen Louise became ill with a chest infection at the beginning of 2009, she wasn’t particularly concerned. It was not unusual for her to have this condition, which she assumed was a consequence of smoking. However, this time the infection did not respond to the antibiotics that she was prescribed.

Despite giving up smoking, Louise returned to her GP many times that year with unexplained symptoms, including a cough that was not getting better, weight loss, sweats and a general feeling of tiredness and weakness – classic symptoms of TB. Louise’s doctor prescribed inhalers, antibiotics and painkillers, but her condition didn’t get any better.

“I became more introverted and isolated. Any exercise or movement left me exhausted, so I stayed at home while I wasn’t at work. I was too tired to stand for even short periods of time,” says Louise.

As an accountant, Louise was able to carry on with her work for some time, as she could do her job while sitting at her desk. Looking back, though, she reflects, “I think I was in denial about how ill I actually was. I lost a lot of weight and was never hungry. In December 2009 I remember coughing up blood and thinking I had cut my mouth.”

When Louise coughed up more blood the following week she became worried, and went to A&E that evening. A chest x-ray showed some ‘abnormal findings’, and Louise was immediately admitted to hospital. She then spent two weeks in isolation, and was diagnosed with TB.

Louise was prescribed TB medication and allowed to go home, and within two to three weeks, she noticed her condition begin to improve. “My strength started to increase day by day, I was allowed to return to work and my appetite returned with a vengeance.”

After completing her treatment and being cured of TB, Louise was told that her lungs were scarred as a result of the length of time that she’d spent infected, and would require careful monitoring in the future. “My biggest challenge now is to maintain a healthy lifestyle so that my immune system can fight off any future infections and I can live a normal, active life.”

However, Louise’s TB journey didn’t end with her successful treatment, as tests on her family, friends and colleagues came back with many positive results including her mother, father and sister, who also had to be treated.

Louise is now in good health and has a positive outlook for the future, but the emotional impact of TB remains strong: “I guess TB still has a stigma attached to it, given other people’s reactions. My consultant told me at the time of diagnosis that TB brings out ‘the hysterical’ in people and I now know that he was telling the truth!”

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Simon’s story

Simon Richardson at Land's EndI wanted to mark a year free of drug-resistant TB by setting myself a real physical challenge. By doing the legendary John O’Groats to Land’s End cycle ride, I was able to prove to myself and the world that I’ve really got TB beat. It was also the perfect opportunity to raise money for TB Alert.

I only had six weeks to train, but managed to do the ride in eight days, shaving four days off the average, which I was pretty pleased with. We were doing days of around 130 km in the sweltering heat – it was full on. But what a sense of achievement when we reached Land’s End!

This wasn’t my first fundraising effort for TB Alert. When I still had TB in 2012, I rowed the distance of the English channel in my local gym. So now, in total, I’ve now raised more than £5,000 for TB Alert – and I couldn’t think of a better charity to do it for.

In the last year, not only have I fully recovered, but I’ve even managed to fulfil my lifelong dream to train as a soldier. I’m going to be posted to Cyprus for three years. I’m already thinking about my next fundraising adventure!


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