Mitigating Social Impacts of Sickle Cell Anemia

Darpan is a journey with adolescents belonging to tribal communities which aims to promote their sexual and reproductive health rights. Through a context-based module which is designed and tested by us, we create groups of adolescents in the communities and run activity based sessions with them.

Currently, we are running this program in tribal-dominant Jhirniya block of Khargone district of Madhya Pradesh. A major population (around 30-35%) of the district is affected by a genetic disorder called sickle-cell anemia which is not only worsened by some cultural practices in the communities, but also witnesses social impact in the lives of the affected people.

Practices like child and early marriage, early pregnancies, and superstitions associated with the disorder are rampant in the villages and often marginalize those who suffer from it. Girls and young women with low decision making power about their education and age of marriage are at a greater risk of bearing the burden of this disorder as early pregnancies often lead to adverse health conditions for both mother and child. When they are not able to fulfil the expected roles in the family, they are often abandoned and ostricized by their in-laws. Low economic power also ensures that they are not able to access medical services. Moreover, men are more reluctant to get themselves checked and take treatment for it as their gender identities prevent them from admitting that they can have this disorder.

Thus, these social and cultural practices exacerbate the impact of sickle-cell anemia. We believe that by making more people aware about their sexual and reproductive health rights, adolescents will not only learn about their body, SRHR and community practices on marriage and pregnancies but also build their aspirations and dreams and work towards them by studying further. This will mitigate the adverse impacts of sickle cell anemia caused by social and cultural factors. 

Some Case Studies

Aarti (name changed) is a sixteen year old girl who grew up in a village in Jhirniya Block of Khargone district of Madhya Pradesh. She is currently studying in tenth standard and walks a long distance of 5 kilometers everyday to reach school. Aarti's parents are farmers and that is the only source of income in the family. 

Aarti's mother shared that Aarti often remained sick in her childhood. The family had spent a lot of money on her illness but they never knew the reason, even the doctors could not detect anything. In 2017, her nails began to fester and she was given several medicines for that. But she found no relief. She continued to miss her school, played less with her friends, and spent more time on bed.

She joined Synergy's adolescent group in 2018 and began to slowly understand her body. She became aware of sickle-cell anemia and told her family about it who got her checked for the disorder immediately. She was positive. Now the family not only knows the reason for her prolonged illness but she is also receiving proper medication and counseling from the organization for it. 

Maya (name changed) is a young married woman who resides in a small adivasi village of Jhirniya. She got married at a tender age and is a mother to an eight month old child. Her daughter is malnourihed. 

She recalls that since childhood, she had been a very unhealthy child. She used to get sick every month and experienced a lot of pain in her knee and arm joints. But, her health drastically deteriorated after her marriage. She faced greater pain and swelling in her feet and hands. Her in-laws had spent a fortune on her illness but they could never really find the solution.

Under our program, she availed the services of getting tested through ANC in the Community Health Center and found that she was sickle cell positive. She was counseled by the team and her treatment started. Now, she regularly takes her medicine (hydroxyurea and folic acid) and this has also shown some positive improvements in her health compared to before.