Malini (name changed) from Odisha’s Angul district did not have a conventional arranged marriage. Instead of matching horoscopes with her prospective husband, she and her family relied on the couple’s medical reports before agreeing to the marriage.
The voluntary forum has been formed to create a stronger support system for people living with SCD and thalassemia. Experts, including Ruby Khan, Deputy Director of the National Health Mission, Madhya Pradesh, and Manoranjan Mohapatra, Head of the Department of Haematology at AIIMS, Delhi, advised patients and their families that people living with sickle cell disease can lead a healthy married life if their partner does not have either sickle cell trait (SCT) or sickle cell disease. which helps reduce the frequency and severity of pain episodes, are available at government hospitals, and haematology departments have been opened at several government and private hospitals, patients and their families continue to face social stigma associated with the disease Although medicines such as hydroxyurea. “In Kandhamal district, where we are studying the social stigma attached to blood disorders, we have found that some people collect medicines from places far from their homes to conceal their condition from neighbours.
Malini, 42, has lived with sickle cell disease (SCD) , a genetic disorder affecting red blood cells, since birth. Yet, she went on to have a successful marriage and is now the mother of a healthy 12-year-old son. Odisha is among the 17 states with a high prevalence of SCD. Around 10.61% of the population screened in the state has either sickle cell trait (SCT) or sickle cell disease, according to available data. The Union government launched the National Sickle Cell Anaemia Elimination Programme (NSCAEP) on July 1, 2023, across 17 high-prevalence states, including Odisha, with the goal of eliminating SCD as a public health problem by 2047.
Asish, a Homozygous Sickle Cell Anaemia patient, said he could endure the excruciating pain caused by the disease, but found it far more difficult to overcome the stigma associated with it. “Social stigma affects people with sickle cell disease more than the disease itself,” members of the newly formed National Alliance for Sickle Cell and Thalassemia Control (NASCETC) said at its first meeting held on the sidelines of the 16th annual congress of the Odisha Haematology Association here on Saturday (September 26, 2026). Marriages also take place without families disclosing the medical condition of their sons or daughters,” said Debarpita Mohanty, a scientist at the ICMR’s Regional Medical Research Centre, Bhubaneswar.
