Stigma, apathy, fatalism: The battle against sickle cell anaemia

TRIBAL COMMUNITIES AFFECTED IN SEARCH FOR A SOLUTION

- Ritesh Mishra , Shruti Tomar 

Chandrika Ganesh, 25, is always tired. And in pain. The kind of pain, she says, that makes a human being want to curl up and die. It begins in one joint, then spreads like a wildfire through her body. For a while, she hoped against hope, and told herself it was nothing. She was pregnant when the pain first arrived. Perhaps it was a mother’s rite of passage, she thought.

On July 1, PM Modi launched the National Sickle Cell Anaemia Elimination Mission (NSCEM) in Shahdol in Madhya Pradesh. (file)
On July 1, PM Modi launched the National Sickle Cell Anaemia Elimination Mission (NSCEM) in Shahdol in Madhya Pradesh. (file)
Also Read | Impact of sickle cell disease on pregnancy and maternal health

Tucked away in the buffer zone of the Chhattisgarh’s Udanti Tiger Reserve, the Gond tribal village of Machki has always faced a host of problems. The people are poor, the closest hospital is miles away, the roads are ramshackle and there are no jobs for the young, who are forced into the life of subsistence their parents eked out. But Ganesh is living evidence of another, quieter, but ubiquitous crisis that lurks behind the thatched mud walls that dot the green of the forest.

Just before she was about to deliver her daughter, in her last scheduled medical check at a decrepit health centre nine kilometres away, Ganesh was finally told what she had always feared. That she was infected with sickle cell anaemia. The news did not shake her or the village. At least seven other women have it. More precisely, it is publicly known that seven other women have it. How many actually do is unknown.