Tribal people in India's Chhattisgarh state are the worst sufferers of Sickle Cell Anaemia.
Bhan Sahu's 13-year-old daughter, Rani, has Sickle Cell Anaemia. It is a disease caused by inherited abnormal haemoglobin and has no widely certified cure. More than 50% of affected children die before they are five years old, and many others die in their youth. "I didn't even know what it was until I took my daughter to the hospital. She was breathing hard and she couldn't play, she was always tired. So we took her, and the doctor said she had SCA," Bhan Sahu said.
Sickle Cell Anaemia is prevalent amongst the socially and economically weak in tropical regions where malaria is common, and a large percentage of the tribal populations in many northern Indian states carry the gene. Prevalence of the disease in Bhan Sahu's area is as high as 30%.
In 2004 the state government was forced to direct all government hospitals to make it compulsory to screen blood samples for the fatal disease because it was discovered that about 3.5 million people were suffering in Chhattisgarh alone. Bhan Sahu says that despite other concentrated efforts to keep the disease under control, remote rural communities such as those in Rajnangaon are unaware that they are carriers of SCA, and that they can pass it on to their children.
"Rani takes medication and she's doing alright now. I don't have SCA but my late husband (he died from a heart attack) might have had it," Bhan Sahu told us. We asked her whether she had thought about the future, when it is time for her daughter to marry and have children. "She's still young. When she grows up we will check her status again. I want her to get married...but it is not a must that she has children. This is the only way this disease will stop."
In modern India, it is unheard that a woman officiated as the priest of a religious event.
Many applications later, hundreds of people continue to suffer.