Four-year-old Orion Qurbonaliev is lucky to be alive. Just last February, the little boy was lying comatose in the tuberculosis ward of a hospital in southern Tajikistan. The bacteria had spread to his spine and paralyzed the right side of his body. He was severely dehydrated and malnourished.
The staff on the government-run ward had run out of options for treating Orion. “They just left this kid to die,” says Tina Martin, a nurse with Doctors Without Borders.
But Martin wouldn’t accept that his case was hopeless. “We said, ‘He doesn’t have to die.’ We’ll fight and see what happens.”
Martin pushed for an intense treatment at the hospital with antibiotics to fight the TB bacteria and steroids to reduce the inflammation around his spine.
Three months later Orion had recovered enough to return home.
Although TB is curable and relatively easy to prevent, it continues to be one of the most deadly infectious diseases in the developing world. It flourishes among the poorest of the poor.
Tight living quarters, inadequate health care and lack of knowledge all help stoke TB epidemics. Left untreated, tuberculosis can consume a person’s lungs, spread throughout the body and eventually be fatal. But ventilation and simple infection control measures can significantly cut the transmission of the airborne bacteria.
Orion’s family lives in a cluster of mud-walled houses outside the city of Vose, Tajikistan, near the Afghan border.
Cows are tethered in the dusty dirt yard. Turkeys, chickens and dogs wander through a whirlwind of children. When Martin comes to check on Orion, he’s lying on a small mat on the porch of the main house.
Orion still can’t walk or speak, but he’s slowly regaining movement in the right side of his body.
He smiles broadly at Martin when she runs a stethoscope over his chest. “He’s not malnourished anymore,” she says. “He’s still not speaking. He has some deficits. He needs a lot of rehabilitation, but he’s actually doing a lot better.”
The four-year-old boy has gained almost 10 pounds since Martin first met him in February.
Martin is now worried about the rest of Orion’s family and wanders which ones may at risk of getting TB. Orion’s older brother Higeron was recently hospitalized with the illness. The difficulty with treating tuberculosis is that it takes months of antibiotics, sometimes even years, to drive the bacteria out of a person’s body. Orion’s grandmother has been on and off TB treatment for years, and Martin has just confirmed that she still has active, infectious TB.
As Martin examines Orion, she tries to stress to the rest of the family that they need to take steps to limit the spread of the TB bacteria in their household: Cover a cough with your arm. Wash your hands. Open a window.
But Orion’s grandmother, Kholbibi Abdulloeva, doesn’t want to discuss this. Martin is about to run up against another major obstacle to eliminating TB everywhere, even in the U.S. — deeply held misunderstandings about how the disease is transmitted.
The grandmother insists that TB comes from the cold, and that Orion got it from swimming in the cold river.
“He likes fish,” Abdulloeva says of her grandson. “So he was saying, “Fish, fish” and going to the river. That’s why he got the TB.”
Martin insists to the Abdulloeva that TB is spread through the air. The 66-year-old woman flatly dismisses the nurse’s explanation. “No, its from cold,” Abdulloeva says.
Orion’s grandfather, Mahmadaly Qurbonaliev, next suggests that a local clergyman may have put a spell on the boy, and that’s why he still cannot walk.
Younger members of Orion’s vast extended family are more open to the idea that TB is an airborne infection. But they are still reluctant to talk about it.
It’s shameful just to have a family member with TB, says Orion’s cousin, Dilshod Ghazoev. “Even if they kill me, I’m not going to tell anyone that I have TB,” the 22-year-old cousin says. “Because I’m going to be ashamed of that.” People are scared of the disease and don’t want to be around anyone who has it, Ghazoev says.”If I have TB, I’ll have less friends. People won’t talk to me.”
Tajikistan is the poorest country in Central Asia, and it has the highest rate of TB in the region. This is not a coincidence.
The country’s clinics and hospitals are overcrowded and underfunded. The winters are bitterly cold, and families tend to crowd together in one heated room.
Nurses like Martin are doing their best to bring clear information to every village, but myth and superstition about TB persist. Some people even think the coughing and wasting away is a genetic condition, Martin says. “Father has TB, daughter has TB, granddaughter has TB — you can understand in a way why they believe it’s genetic.”
Shame may be the most powerful obstacle of all. A girl is shunned if she’s had tuberculosis. She may have difficulties getting married later in life. “So they try to hide TB,” Martin says. “We find that is a big problem.”