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Thalassemia is a genetic disorder characterized by insufficient hemoglobin production, leading to a deficiency of red blood cells and, as a result, anemia. While carriers of the thalassemia gene can live normal lives, people with thalassemia major have to undergo frequent blood transfusions, have increased susceptibility to various infections, hepatomegaly splenomegaly, bone issues and other health complications, including organ failure. Thalassemia can be of different types, but predominantly alpha or beta. World Thalassemia Day is observed every year on 8 May to raise awareness about this genetic disorder and support people living with it and their caregivers, support research for its cure, and debunk myths about the disease. Is. (Also Read | World Asthma Day 2024: Date, history, significance and everything you need to know)
History of World Thalassemia Day
In the year 1994, World Thalassemia Day was first established by Panos Anglezos, founder of the Thalassemia International Federation (TIF), in memory of his son George, who died of thalassemia. This day was created to make efforts to fight this disease, remember those who lost their lives to it, and find a cure. It was also an effort to bring together the general public, public authorities, health care professionals and industry representatives to spread awareness about the prevention, management and treatment of the disease.
Thalassemia awareness has also gained momentum through the efforts of patient support groups, health care professionals, and advocacy organizations around the world. These groups aim to highlight the challenges faced by individuals with thalassemia and their families, including the need for regular blood transfusions, iron chelation therapy and access to quality health care.
How is World Thalassemia Day celebrated?
On World Thalassemia Day, various activities and programs are organized by health care institutions, patient support groups and community organizations. These activities may include educational seminars, blood donation drives, fundraising events for thalassemia research and patient support, awareness campaigns through media and social platforms, and advocating for better health care policies and services for thalassemia patients.
diagnosis
“Diagnostic tests, such as hemoglobin electrophoresis and DNA analysis, confirm the type and severity of thalassemia. Prenatal diagnosis by CVS/amniocentesis can help understand the condition in the womb. Preimplantation Genetic Testing {PGT(M)} , where embryos can be screened and healthy embryos can be implanted. Early detection enables proactive management, including prevention and education for better outcomes. It is important to empower individuals through accessible screening programs,” says Dr. Deepanjana Dutta, BGCI Level II Certified Genetic Counselor at Renew. Health care.
“Early detection through Hb HPLC blood test is important in managing thalassemia and securing the future well-being of the coming generations. With informed decisions enabled by pre-marital screening, couples can effectively manage family planning and prenatal care. Awareness and proactive measures like genetic counseling offer hope in preventing the birth of affected children. Although thalassemia may not always be apparent, its impact can be profound, in the absence of therapeutic options. Lifelong treatments such as blood transfusions and iron chelation are required. With premarital screening, we can reduce the burden of this genetic disorder on families and health care systems, promoting healthy outcomes for all,” Dr. Rahul Naithani Director and Head Hematology and Bone Marrow Transplant, Paras Health, Gurugram.
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