Beyond the Diagnosis: Lived Experiences of People with Sickle Cell Disease in South India

Source
Springer Nature Link

Abstract

Background

Sickle cell disease (SCD) is an inherited blood disorder characterized by the presence of sickle-shaped erythrocytes, leading to haemolytic anemia, vaso-occlusive crises, and multi-organ complications. In this study, we describe the lived experiences of persons with SCD (PwSCD) and their caregivers within their social and cultural contexts, aiming to uncover the factors that limit effective healthcare for tribal communities in India.