Sickle cell disease in Sundargarh: understanding local beliefs and screening efforts among tribal population, Western Odisha

Background: Sickle cell disease remains a significant health challenge among Odisha’s tribal communities, where limited awareness and healthcare access lead to delayed diagnoses. This study examined the incidence of sickle cell disease and local perceptions of it in Sundargarh’s Subdega and Balisankara blocks. Methods: This cross-sectional study, conducted from June 2023 to March 2024 in Sundargarh, Odisha, examined the prevalence of sickle cell disease and assessed community perceptions using questionnaires, screenings, and HPLC analysis. 280 respondents participated, providing insights into sickle cell disease awareness, while 210 children were screened for early detection. Findings were presented through descriptive statistics, Pearson correlation, and Kruskal-Wallis tests, with significance set at p<0.05. Results: A total of 280 adults (males: 117 and females: 163) with 95 children (below 15 years) from the same families were freshly diagnosed with sickle cell disease, and they were unaware of the condition. Of the 280 people sampled, 54.3% had not even heard of sickle cell disease; only 9.37% knew it was an inherited disease. Limited awareness of sickle cell disease led to misconceptions, with many relying on traditional healers. Conclusions: The study found a prevalence of sickle cell anemia (HbSS) among variants of sickle cell disease, with limited awareness and testing. Strengthening education and healthcare access is essential for better detection and support, though overall perceptions of the disease were positive.