When genes wield a sickle Premium

Kumar's daughter diagnosed with Sickle Cell Anaemia, highlighting challenges faced by tribal communities in Andhra Pradesh.

Kumar was travelling for work in 2016 when he received a call from his daughter’s school. An urgent voice on the other end informed him that the six-year-old had fell unconscious.

Far away from his home in Araku Valley, he frantically called his wife and asked her to rush to the school. It took him a few hours to reach the school, with worry gnawing through his heart.

He found that his daughter’s legs had swelled and lumps had formed on several parts of her body. With no major medical facilities available in the tribal area, a frightened Kumar decided to take his daughter to King George Hospital (KGH) in Visakhapatnam, about 120 km away. It was at the hospital that he first came to know about the malady afflicting his child, a name that has not left his mind since: Sickle Cell Anaemia.

“We were unaware of the disorder then, but I have since enquired about it and learnt that there are some more cases in Ananthagiri, Pedabayalu and Paderu. In some cases, children have even died,” says Mr. Kumar, stress and fatigue weighing him down. He later took his daughter to a retired paediatric doctor in Visakhapatnam, who, he says, had a vast experience treating such children. The child underwent treatment for over two weeks, and Kumar, his wife and the rest of the family were told to get tested. The results showed that Kumar and his wife were ‘traits’, which means they are in safe zone and asymptomatic.

“Jaundice is the most common health issue she suffers. If she gets stressed owing to studies, games or any other reason, she develops swelling on her body, joint ache and fever among other issues. Sometimes, there is a drop in platelets, and we need to monitor blood levels regularly,” Kumar explains.

Even a change in temperature triggers health complications in a person with Sickle Cell Anaemia, he says. During November-February, when temperature drops to single digits in the Agency areas, his now 15-year-old daughter battles with breathing difficulties in the mornings.

“Every month, we go to Visakhapatnam from Araku Valley for health check-up. We had even tried taking her for advanced treatment in Hyderabad. Once one develops this disorder, the patient needs lifelong treatment,” says Kumar, who is a pastor.