TB survivors from Indonesia, Tajikistan, South Africa tell stories of unique challenges, common ordeals, and continued toll

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Kedibone

Kedibone Mdolo

A South African nurse described the shame and denial that complicated her treatment for tuberculosis. An Indonesian mother of three recounted the months of debilitating treatment and isolation during which she considered suicide. A man from Tajikistan told how he completed treatment for multidrug-resistant TB the month he lost his second brother to the disease.

The three survivors came to Washington, DC on Tuesday to commemorate the 133nd anniversary of the day the bacteria that causes tuberculosis was discovered, and to bear witness to the failures, disparities, prejudices and neglect that have allowed a disease once considered nearly conquered to take sweeping tolls on their countries, and on their lives.

Kedibone Mdolo had worked as a nurse in South Africa, where tuberculosis kills more people than any other disease, for years before she got her own diagnosis. “Truly speaking, the extent of exposure is something you don’t take into consideration,” she said in an interview Tuesday.

“It’s not possible,” she told herself, until her cough grew too constant to ignore. When she faced the truth, she was overwhelmed with anger at herself. “You end up having a wall around yourself.”

“How stupid am I?” she remembered asking herself, wondering what her patients would think of her. She believes that’s why her medicine nauseated her to the point that she vomited every time she took it. “The day I accepted the disease, I stopped vomiting,” she said. Cured in 2008 she has traveled the world, and communities in her country to break the silence that still surrounds the disese. “Because I overcame the stigma,” she said, “I saw how dangerous it could be.”

Ully

Ully Ulwiyah

Ully Ulwiyah  comes from a country where the toll of  tuberculosis averages more than 300 lives a day. Still, when her coughing began in 2000 she was treated with traditional medicine. It wasn’t until 2005 that she was diagnosed with tuberculosis and treated,  and although her treatment was interrupted briefly by a pregnancy, she was declared cured. When she grew sick again in 2008 available tests indicated she was not resistant to the first line of TB medicine, but nearly three years later further testing finally proved she was. During the nearly two years that followed, of being afraid to hold her own children, of daily injections and pills that clouded her mind, she considered suicide briefly, she said Tuesday. She credits her husband and parents, and her love for her children with her survival. She was declared cured in 2013. She’s lost friends to the disease — their deaths caused by suicide as well as infection, she said. “One of my lungs doesn’t work,” she added, speaking through an interpreter. She gets easily sick, easily tired. “We’re not the same, like normal people anymore.”

Safar

Safar Naimov

Safar Naimov recognized the symptoms of tuberculosis when they began to overtake him in 2009. His younger brother who had first been diagnosed in 2002, had been treated repeatedly without improvement. Still, when Naimov began to lose his strength he blamed the meals he skipped and the hours he stayed up with his brother, who by then he had taken to New Delhi, then the nearest place to Tajikistan where they could find drugs for his brother’s now confirmed drug-resistant illness. Another of his brothers was very sick with tuberculosis by then as well, and his own diagnosis was delayed by a trip home. For Naimov’s diagnosis, a sample of his sputum was sent from Tajikistan to Germany. By then he had lost his voice for two months.The treatment was worse than the disease. “It is like you are in a totally different dimension of this world,” he said Tuesday. Among the side effects was a feeling that needles were stabbing his eyes. Closing his eyes in a dark room after taking the pills helped, he discovered. He finished his treatment in November 2012, the month he lost his second brother to tuberculosis. “We were seven brothers,” Safar said. “Thank God we have five.” They pay close attention to each others’ health he said, and he works with a group of tuberculosis survivors and response advocates.

 

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