Thalassemia is an inherited blood disease that causes a low production of healthy red blood cells, resulting in low levels of hemoglobin. Every year on May 8, World Thalassemia Day is observed to raise awareness about the disease and also provide support to people who have been battling thalassemia and their families. The day was created in 1994 by Panos Englezos, President and Founder of the Thalassemia International Federation, in memory of his son George and other Thalassemia patients who fought the disease bravely. This year, the theme of World Thalassemia Day is ‘Be aware. Share. Care.’
As we raise awareness about the blood disorder, it’s important to note that there are several misconceptions surrounding thalassemia that can cause confusion. On World Thalassemia Day, the myths surrounding the disorder are debunked and proper information is spread among the public. Dr Rema G, Consultant, Clinical Haematology and Stem Cell Transplantation, Amrita Hospital, Kochi, lists out some myths and facts about the condition.
World Thalassemia Day: Myths Vs Facts
Dr Rema G busts some myths about thalassemia and blood disorders that can lead to misinformation and be potentially harmful:
Myth 1: All anemias, including thalassemia, can be treated with iron supplements
Fact: Iron supplements are often used to treat anemia, which is a condition characterized by a decrease in the number of red blood cells or a decrease in the amount of hemoglobin in the blood. Iron supplements are useful to treat anemia caused by nutritional iron deficiency or anemia secondary to bleeding. Thalassemia can present as anemia. However, in the case of thalassemia, iron supplements may not be effective or appropriate.
Thalassemia is a condition in which the body produces fewer red blood cells than normal, and the red blood cells that are produced are often smaller and have less hemoglobin. This means that the body may not be able to use the iron in the body effectively, even if it is present in sufficient quantities. Individuals with thalassemia major can be at risk for life-threatening complications if they do not receive proper treatment, including blood transfusions.
Myth 2: Thalassemia is not preventable
Fact: While some communities have a higher prevalence of this gene, it is possible to detect the thalassemia trait in young couples belonging to such “at-risk” populations through hemoglobin electrophoresis by HPLC or DNA analysis of the beta gene mutation. DNA mutation analysis during early pregnancy in at-risk thalassemia carriers, from chorionic villus biopsy or amniotic fluid analysis, can help identify if the fetus is thalassemia major. Medical termination of pregnancy (depending upon the cultural and religious beliefs of the couple) can be offered to prevent the birth of a thalassemia major child. Therefore, thalassemia major is preventable.
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Myth 3: Individuals who are carriers of thalassemia should avoid marrying other carriers to reduce the likelihood of having a child with thalassemia major.
Fact: As long as people with thalassemia minor know each other’s thalassemia status and undergo DNA mutation testing, they can get married. Pre-implantation genetic testing, PGTM (pre-implantation embryonic genetic testing), can be used to select an embryo that does not have the thalassemia gene and to ensure the birth of a non-thalassemia major child.
Myth 4: There is no treatment for thalassemia major
Fact: Thalassemia major can be treated by regular transfusions of leukocyte-filtered blood to reach adulthood in good health. It is essential to monitor the level of ferritin for iron overload and use medicines that remove excess iron from the blood, such as oral iron chelation agents. Additionally, allogeneic bone marrow transplantation can be a curative option for thalassemia major, and gene therapy has shown promise in phase II trials for curing thalassemia major in clinical trials.
Myth 5: Thalassemia only affects certain ethnic groups
Fact: Thalassemia can affect anyone, regardless of ethnicity or race. However, certain populations have a higher prevalence of the gene, including people from Mediterranean, Middle Eastern, and Southeast Asian countries.
Myth 6: Thalassemia is contagious
Fact: Thalassemia is not contagious and cannot be transmitted from person to person through contact or exposure to body fluids. Thalassemia is an inherited genetic disorder, which means it is passed down from parents to their children through their genes.