TB 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.

If 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.

When 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 give her TB or HIV 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 diagnosed and into treatment quicker, and tackling the stigma and discrimination that Medson faced.

As a young law student, Amy’s attention was focused on her studies. When she developed a dry, itchy cough and began to lose weight rapidly, she thought it was the stress of her degree. When a relative suggested TB, she felt sure the BCG vaccine she’d had as a child protected her from this ‘disease of the past’.

But it turned out Amy had TB, and the long delay in diagnosis ultimately led to her losing a lung.

Amy has experienced both sides of peer support, which our TB Action Group provides to people going through treatment. “When I was diagnosed with TB, I had to put my university studies on hold, and was feeling isolated and frustrated at the lack of support available. I wanted to talk to someone personally affected by the illness,” she says.

“I called TB Alert, and was put in touch with Anna. We spoke mainly over email and Facebook and then met up. I felt less alone knowing Anna was there and the fact that she’d completed her treatment and graduated from university gave me hope for the future.” Amy eventually finished treatment, graduated from university and is now at the Race Equality Foundation.

Last year, she provided peer support for Abid, a Pakistani migrant receiving follow-up care for TB at an immigration removal centre in Manchester. “I visited Abid three times, giving him moral support and reassurance. We talked about his care and treatment, and I also gave him more practical support by liaising with his solicitor.”

As well as providing peer support, Amy now acts as a patient advocate for TB Alert – helping to prevent others from suffering unnecessarily as she did.

Staff from the Delhi DIVINE Project met Urmila, who owns a small shop in the Nathupura District of Delhi, while carrying out a survey to assess the local TB situation. Urmila helped them to get information about the area and introduced them to local members of the local community. This inspired Urmila to become a project volunteer and TB Alert India supported her to enrol for training under the national TB programme.

Since then, Urmila has made a huge contribution to efforts to tackle TB locally. She has organised 16 community meetings which have raised awareness of TB among local people. She has also provided TB medications and support through Directly Observed Treatment to 60 people throughout their recovery from TB.

TB patients who have been supported in this way find Urmila’s shop location and opening hours make it really convenient for them to get their treatment, and Urmila offers them support and encouragement to complete their full course of medication – they call her Urmila Didi (big sister).

Jennifer Mwale, 46, is a traditional healer in the Chibuluma township of the Kitwe District, Zambia. She lives with her husband, a farmer, and five children that range in age from five to 21.

Healing is a proud tradition in Jennifer’s family. When Jennifer’s Grandfather died he appeared to her in a dream. He asked her to follow in his footsteps and to begin a life of healing others. Jennifer learned her trade through visions and dreams that lead her to create remedies using leaves, roots and tree barks.

Jennifer explains that she often “treated people with symptoms of persistent cough and weight loss with an herbal remedy made from the root of the ‘Mussessa’ tree. I did not realise that they could have TB.”

In 2012, Jennifer was approached by a community worker from TB Alert’s COTHAZ project, who enrolled her on a five day TB training programme at a training centre in Kitwe. Today, Jennifer recognises the symptoms of TB and understands that the person with such symptoms needs to go to the nearest clinic for diagnosis and treatment. She refers all her clients with similar symptoms to the clinic and doesn’t try to treat them herself.

“There are fewer people dying of TB in our community now and I feel happy about it,” says a smiling Jennifer.

Jennifer Mwale

As Murambinda’s TB Clerk, Emmanuel understands the devastating consequences of failing to complete treatment. When he noticed that Jonah, a patient under Murambindia’s care, had not been to his local clinic to collect his medication, Emmanuel decided to pay him a visit. It took a while for him to track down Jonah, who was a roving cattle herder.

Jonah explained why he had stopped taking his medicine: “Before I was diagnosed with TB I was very scared. I had chest pain, sleepless nights, shortness of breath, I was losing weight and had no appetite – I was thinking that I was about to die. When the hospital discharged me they told me to go to my local clinic each month to get my medication, but they never had any drugs.

“The clinic told me to go back to the hospital for my medication, but it is too far to walk – 24km each way – and I can’t afford the bus fare. The thing is, I feel fine now and I have to work to make some money. I don’t need to come back for tablets.”

Patient outreach work is invaluable to understand why patients, like Jonah, may stop taking treatment. This helps Murambinda tailor their TB programme to best support people to complete their treatment. As a result of speaking to Jonah, and patients like him, Murambinda now provides:

• health education, to help patients understand the importance of treatment completion
• financial support, to help patients meet the costs of transport and good nutrition
• TB medications to local clinics, to ensure clinics have the supplies to support patients through Directly Observed Treatment.

Emmanuel made sure that Jonah’s local clinic received regular stock of TB medication and that Jonah was provided with the financial support he needed to visit the clinic for regular treatment.

I 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!

James’s experience of tuberculosis treatment is still fresh in his mind and his emotions – 60 years on from being diagnosed with pulmonary TB in December 1952.

The fact that he is alive today is testament to the exciting changes that were happening to TB treatment at the time. New TB drugs, PAS, Streptomycin and Isoniazid, were becoming widely available; and Sir John Crofton was trialling combined therapy successfully in Edinburgh. Even today, tuberculosis is still treated through a combination of some of these same drugs – the famous ‘Edinburgh Method’.

James was a keen footballer and generally a fit and healthy young man when he got TB. But at the time of his diagnosis he was a shadow of himself, having lost two and a half stone in just six weeks. James was quickly diagnosed through a chest x-ray and referred for treatment in a TB sanatorium, where he stayed for over a year.

Fresh air and total bed rest were still common treatments for TB in the 1950s. James recalls being in the open air from dawn to dusk each day, in all weathers, for over seven months. James was among the first people to receive one of the new life-saving antibiotics, Streptomycin. Doctors were still working out the appropriate dose to give patients at the time, and James was told that had he developed TB just a year earlier he would have been unlikely to live for another year. Happily, James is still going strong 60 years on.

Although James was cured of TB, the damage to his health was long-lasting. He continued to cough up blood for decades after his illness, a terrifying result of the scarring to his lungs from TB. He also remains moved by his experience today. As James explains:

“I was devastated by TB. I’m scared that a lack of awareness about the increasing amount of TB in the UK today may lead to others going through the same thing as me. That’s why that I was glad to discover that TB Alert is doing something about it, and why I’m happy to share my story.”