Before marriage, match your sickle cell status, not horoscopes, say experts in Odisha

Malini (name changed) from Odisha’s Angul district did not have a conventional arranged marriage. Instead of matching horoscopes with her future husband, she and her family relied on the couple’s medical reports before agreeing to the marriage.

Malini (42) has been living with sickle cell anemia (SCD), a genetic disorder affecting red blood cells, since birth. Nevertheless, she had a successful marriage and is now the mother of a healthy 12-year-old son.

Asish, a manager at the public sector Mahanadi Coalfields Limited (MCL), was not so lucky. Although he had a stable and well-paid job, he could not convince his girlfriend’s family that there was no harm in marrying her. A renowned hematologist also tried to mediate, but the couple’s nine-year relationship ultimately did not culminate in marriage.

Odisha is among the 17 states with high prevalence of SCD. According to available data, approximately 10.61% of the population screened in the state have either sickle cell disease (SCT) or sickle cell disease.

Asish, a patient with homozygous sickle cell disease, said he can endure the excruciating pain of the disease, but the stigma associated with it is much more difficult to overcome.

“Social stigma affects people with sickle cell anemia more than the disease itself,” members of the newly formed National Alliance for Sickle Cell and Thalassemia Control (NASCETC) said at their first meeting held on the sidelines of the 16th Annual Congress of Odisha Association of Hematology here on Saturday (September 26, 2026). The voluntary forum was created to create a stronger support system for people living with SCD and thalassemia.

The Union Government launched the National Sickle Cell Anemia Elimination Program (NSCAEP) on 1 July 2023 in 17 high-prevalence states, including Odisha, with the aim of eliminating SCD as a public health problem by 2047.

“The program is one of India’s largest initiatives to control a genetic disease and is closely watched internationally for its scale and comprehensive community approach. Apart from medical interventions, we also need to address the taboo and social stigma surrounding the disease. People living with SCD themselves must take the lead in creating awareness about the condition,” said Professor RK Jena, a renowned hematologist.

Experts, including Ruby Khan, Deputy Director, National Health Mission, Madhya Pradesh, and Manoranjan Mohapatra, Head, Department of Hematology, AIIMS, Delhi, have advised patients and their families that people living with sickle cell disease can lead a healthy married life if their partner has neither sickle cell disease (SCT) nor sickle cell disease.

“Kundli milao ya na milao, lekin sickle cell anemia milana zaruri hai (match horoscopes or not, but matching sickle cell disease is a must). Pregnant women should also undergo prenatal diagnosis, while screening of family members should be done as a preventive measure,” said Dr. Khan.

Professor Mohapatra said that unlike thalassemia, people with SCD can lead normal lives and that not every patient needs a bone marrow transplant.

“Not every patient will need a bone marrow transplant. Patients need to follow the advice given by their doctors and overcome their fears,” he said.

Although drugs such as hydroxyurea, which help reduce the frequency and severity of pain episodes, are available in government hospitals and hematology departments have been opened in several government and private hospitals, patients and their families continue to face the social stigma associated with the disease.

“In Kandhamal district, where we study the social stigma associated with blood disorders, we found that some people collect medicines from places far from their homes to hide their condition from neighbors. Marriages also take place without families disclosing the health status of their sons or daughters,” said Debarpita Mohanty, a scientist at the ICMR Regional Medical Research Centre, Bhubaneswar.

Published – 27 Sep 2026 07:08 IST