Reproductive Health in Women with Sickle Cell Disease: A Cross-Sectional Study from Endemic Tribal Regions of India

To report the reproductive health issues, access to genetic counselling, and reproductive decision-making among women with sickle cell disease (SCD) in SCD-endemic tribal regions of India. Cross-sectional data were collected using a structured, pre-tested questionnaire from 108 women with SCD and 108 socio-demographically matched non-SCD controls across five SCD endemic districts in India. Women with SCD had a higher mean age at menarche (13.5 vs. 12.8 years), more frequent irregular cycles (30% vs. 20%), and a higher prevalence of scanty menstruation (27% vs. 20%) compared to controls. Dysmenorrhea and fatigue were more severe, and gynaecological issues such as white discharge and pelvic pain were more frequent in women with SCD. Only 35% of ever-married women with SCD were aware of their diagnosis before marriage. Awareness and uptake of genetic counselling services were limited. Women with SCD in Indian tribal areas face various reproductive health challenges and low awareness of genetic risks. These challenges contribute to delayed decision-making around marriage and childbearing and may hinder the use of disease-modifying therapies due to fertility concerns. The study warrants implementation of culturally-appropriate, gender-sensitive, comprehensive SCD care that includes reproductive healthcare and counselling services, as part of the National Sickle Cell Anaemia Elimination Mission.