Stories from Eurasia
When Yousra, age 11, came to the hospital in Karachi, Pakistan with tuberculosis (TB), it was hard to trace where she had contracted the disease. In just her immediate neighborhood, at least seven people in three different households were undergoing treatment for TB. Yousra herself was already in her fourth month of TB treatment, but she was not getting better. Her cough, fever and weight loss were persisting. Weak and unwell, she came to the public hospital.
Yousra’s new doctors suspected drug-resistant TB (DR-TB). After the lengthy two months required to do drug susceptibility testing, Yousra’s TB was found to be a drug-resistant strain. She was finally started on treatment for her DR-TB.
Due to a lack of pediatric formulations of her medications, her treatment has been taxing, both physically and emotionally. She has trouble swallowing cycloserine, one of her new medications, and has a very difficult time receiving painful daily injections of one of the other drugs. Despite the headaches, nausea and vomiting her medications cause, Yousra nobly persists on her treatment course: “I wish I didn’t have to take so many medications, they make me feel weak and nauseous, but I am finally improving after starting the right medicines. I will do anything to make them taste better and will take them responsibly.”
Story Collected by: Farhana Amanullah (Indus Hospital)
Anna was 16 years old when she was told she had tuberculosis (TB). Her father, with whom she lived in Karachi, Pakistan, had died a few months earlier of lung disease. The family was told that it was either lung cancer or TB that had not been investigated. Anna, meanwhile, was very ill and severely malnourished.
Anna’s doctors started her on first-line TB treatment. They also performed drug-susceptibility testing to see if she had DR-TB. Indeed, after two months, Anna’s culture showed she was resistant to isoniazid and pyrazinimide, two of the main drugs used in first-line treatment of TB. Anna’s doctors switched her treatment course accordingly.
Anna struggled with her DR-TB treatment. Her lungs were already in very poor condition at the start of her treatment, requiring her to have oxygen therapy at home. She hated having to take 11 pills a day, and felt extremely nauseated whenever she ingested the toxic drugs. Anna cried out in pain every time she received the injections that were also part of her treatment.
Anna and her mother also suffered emotionally as a result of her TB and her poor prognosis, despite the help of their treatment supporter. Anna became extremely depressed. She got upset when treated like she had a fatal disease, and irritated when others were concerned that she would pass it onto them. After a month of oxygen therapy, Anna’s doctor informed her that her respiratory distress was worsening, and that the end was near. She lost all hope of getting better. Anna died soon after, leaving her mother devastated.
Story Collected by: Farhana Amanullah (Indus Hospital)
“I am going to be president someday,” seven year-old Luka says proudly. He smiles an impish grin and goes back to practicing his English letters. His three-year old, tow-headed brother Giorgi tears around the room. Their 18 month-old sister Maryam sits quietly on her mother’s lap alternately sucking on a soggy biscuit and the earpiece of a toy stethoscope. The children look happy and healthy; all three are currently being treated for Drug-Resistant Tuberculosis (DR-TB) in Tbilisi, Georgia.
The children’s father lies dying from DR-TB in a hospital room down the road. By the time he received diagnosis and treatment for his disease, it was too late. His physicians were appropriately worried about the children though, and all three were quickly screened for TB. The news was not good: all three children were sick with the same extensively drug-resistant strain as their father.
But Luka, Giorgi and Maryam were fortunate. Not only did they receive a timely diagnosis of DR-TB. They were also offered immediate access to care through the government TB program in Georgia. Today, all three children are thriving. Their relieved mother states: “I am so thankful for the gift of my family. For my husband, really, there is no hope. He will die here and he will die soon. [But] my children are getting better. The people who help us are here. I am so thankful for the lives of my little ones.”
Story Collected by: Jennifer Furin (TB Research Unit at Case Western Reserve University) and Medea Gegia (National Center for Tuberculosis and Lung Disease)
The name of the child in this story has been changed to protect confidentiality.
Sonnu, 11 years old, was living in the Kandivali slums outside of Mumbai with his uncle, his older sister, and his younger brother. The siblings had sadly lost their mother a few years earlier. Sonnu had been diagnosed with HIV and been monitored since he was 10 years old by a nongovernmental health care organization. In 2007, when he was 11, he developed TB, and began taking first-line drugs. Soon after, his doctors confirmed that his strain of TB was resistant to six drugs. They counseled Sonnu and his uncle before starting a DR-TB treatment regimen of six drugs.
However, in later adherence counseling sessions, it appeared that Sonnu’s uncle had become less caring toward Sonnu and his siblings—he treated the children like servants, ordering them to cook for him and clean the house. The uncle was also trying to take the house (which was in Sonnu’s mother’s name) away from them. As a result, Sonnu and his siblings stopped respecting and listening to their uncle, and this affected Sonnu’s treatment adherence. He would take his tablets at home in front of his uncle, and vomit them out in the bathroom. His uncle, indifferently and irresponsibly, did not report this to Sonnu’s doctors, nor did he enforce Sonnu’s attendance to important medical appointments.
Sonnu’s counselors worked intensively with Sonnu and his uncle, both independently and together, to address these behavioral issues. They added a directly observed therapy provider to monitor treatment. Sonnu’s siblings were enrolled in boarding school so that the uncle could pay closer attention to Sonnu. After seven months of DR-TB treatment, and additional counseling, Sonnu began first-line antiretroviral therapy for HIV.
Over time, Sonnu’s adherence to both the DR-TB treatment and antiretroviral therapy improved. At the age of 13, Sonnu completed his course of DR-TB treatment. After rapid improvement in his CD4 count, his HIV care was transferred to a government center, where he continued to receive treatment.