Bhagwan Badole has the physical appearance of a six year old. He is actually 14 and gets uncomfortable when his age is discussed. A resident of Rehtiyawadi in the Jhirniya block of Khargone district, Madhya Pradesh, Bhagwan was irregular in school and reluctant to socialise till recently. He felt he was made fun of for his height. His poor health—he gets severe pain and breathing complications— kept him mostly at home.
His elder brother Kanu, 16, has a similar issue. The poor Barela tribe family, still recovering from the death of Bhagwan’s father, Rain Singh, four years ago, was too caught up in earning a living to focus on the health of the children.
Kanu, despite his poor health, has gone with his mother, Sabli Bai, and elder brother Bharat, 20, to Pune to work as labourers. Kanu cannot do any physical work, but he wanted to be with his mother. “Kanu and Bhagwan would remain sick a lot,” Dharmendra Badole, the eldest brother, told THE WEEK. “We would regularly take them to hospital and get blood transfusion done at least once a year, though we did not know what the disease was.”
Things changed a few months ago. Under a screening drive by the NGO Synergy Sansthan, Bhagwan and Kanu were diagnosed with sickle cell anaemia (SCA), the most common and most severe of the group of genetic blood-related disorders called sickle cell diseases (SCD).
SCA is widely prevalent in India, especially among disadvantaged groups like the tribals and the scheduled caste communities. There are some other forms of sickle cell diseases, but they are rarer and milder.
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