There are significant advancements in the diagnosis and treatment of thalassemia and sickle cell anemia. But in India, one of the major challenges is social, not medical. There is a huge discrimination and stigma stemming from a lack of misunderstanding among people. Sickle cell anemia patients feel isolated after diagnosis and also encounter discrimination at the workplace or schools.
Genetic counselling is the most crucial thing when dealing with inherited diseases. Dr Dua says that genetic counselling plays an integral role because it empowers families with the right guidance and emotional support that helps to prevent strategies and manage disease.
Genetic Counseling aids people in knowing how genetic mutations are inherited, as per the National Human Genome Research Institute, what different diagnosis methods are available, and what steps to take for family planning. Genetic counseling also offers emotional support to families.
Living Beyond Tags
Awareness of sickle cell anemia aids patients in shifting their belief from limitation to possibility. With modern advancements including stem cell transplantation, hydroxyurea therapy, gene-based therapies, or transfusion programmes, patients with sickle cell anemia can live longer and healthier. Experts say that communities should know that a genetic inherited disease does not define a person's abilities or even future.
Experts also say that awareness is more than replacing challenging stigma or fear; it's about ensuring that they get emotional support and equal opportunities. Dr. Dua says that awareness about genetic disorders helps patients be treated better and they feel supported without any judgment. Creating awareness about sickle cell anemia and other genetic disorders is a collective social responsibility.
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