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Thalassaemia is an inherited autosomal recessive disorder that is acquired by a person genetically from either a single parent or both. The observance of International Thalassaemia Day on May 8th is to remember the patients of thalassaemia who have succumbed to the condition. Moreover, it is also observed as a celebration, especially for the patients who are giving thalassaemia a tough fight to live a quality life.
So, what is thalassaemia? It is a genetic disorder associated with haemoglobin, which is a protein rich in iron and available in red blood cells. Haemoglobin works as an oxygen transporter to the blood. Hence, if someone has thalassaemia, they would have less haemoglobin than normal, which can make life difficult. Thus, thalassaemia patients require multiple blood transfusions regularly.
Reports state that over 280 million people worldwide are suffering from thalassaemia. Among them, over 5 lakh people are going through a severe form of the disease.
Though thalassaemia disease is prevalent across globe, it is said to be most common in the below mentioned ethnic groups, such as;
Some thalassaemia major symptoms include;
Thalassaemia International Federation (TIF) is an organization started by Panos Englezos. In 1994, Englezos established the International Thalassaemia Day. He initiated the day in the memory of George, his son who died due to thalassaemia.
International Thalassaemia Day is an occasion when many organizations including international associations come together and promote the significance of counselling sessions, prenatal screening and other thalassemia treatments.
Thalassaemia is a genetically transmitted illness that is acquired by patients from their parents. There are over one lakh patients suffering from thalassemia in India, with lakhs of carriers of this disease.
Globally, thalassemia affects thousands of pregnancies which give birth to many babies born with thalassemia major. A greater number of these patients are born in underdeveloped countries with no or less means of treatment for this disease. As such, treatment of thalassemia major is very expensive as it involves transplant of stem cells along with frequent blood transfusions. Hence, it is important to prevent this disease before birth. Prenatal screening is a process that can be used to identify the condition at the fetal stage.
However, not many people know about it and so it is important to create awareness about it among them. And there can be no better platform than the World Thalassemia Day to educate the public about healthcare campaigns on thalassemia in pregnancy. This way, through counselling, prenatal diagnosis, genetic screening, cases of thalassemia can be curbed before the birth of the child.
The World Thalassaemia Day 2023 theme is “Be Aware. Share. Care: Strengthening Education to Bridge the Thalassaemia Care Gap. ”
Thalassemia is a disease that cannot be prevented. However, it can be managed. Below are some measures which can limit the risk of thalassemia among newborn babies.
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