Every year on May 8th, International Thalassaemia Day is observed to raise awareness about thalassaemia, an inherited blood disorder that affects millions of people globally. The day is dedicated to educating the public about thalassaemia, its impact and the need for research and treatment. The day is also observed to empower and support individuals with thalassaemia to lead healthier and better lives by promoting equal access to various treatment options.
Panos Englezos, the Founder and President of the Thalassaemia International Federation (TIF), first established this day in 1994, in remembrance of his son George Englezos who died of thalassaemia. This year’s theme for International Thalassaemia Day is “Empowering Lives, Embracing Progress: Equitable and Accessible Thalassaemia Treatment for All”.
Image Credits: Instagram @tif_thalassaemia
What Is Thalassaemia?
Thalassaemia is a genetically transmitted blood disorder that primarily affects the red blood cells and hinders their ability to produce enough of a protein called haemoglobin. The symptoms of this disease generally include anaemia, enlarged spleen, pulmonary hypertension and others depending on the type of thalassaemia.
Types of Thalassaemia
Haemoglobin is the protein responsible for carrying oxygen to all cells. Haemoglobin is made up of two parts called alpha and beta respectively. Thalassaemia is broadly divided into two based on the absence or low production of either the alpha or beta part of the haemoglobin. Low alpha causes Alpha Thalassaemia and low beta causes Beta Thalassaemia.
Treatments and Prevention
Treatments vary according to the type and severity of thalassaemia a person has. Some of the treatments include blood transfusions and iron chelation therapy. Since thalassaemia is an inherited disorder, prevention is extremely difficult. A few measures one can take are a parent genetic test for the presence of the thalassaemia gene, prenatal screening and providing public awareness and education about thalassaemia.
International Thalassaemia Day serves as a reminder of the challenges faced by individuals living with this rare blood disorder. According to the official website of the Thalassaemia International Federation (TIF), an estimated 100 million people worldwide carry the genes responsible for thalassaemia and more than 300,000 babies are born annually with severe forms of thalassaemia. In India, 40 lakh people carry these genes and there are more than one lakh patients who are victims of thalassaemia.
On this day, let us spread awareness about thalassaemia and encourage people to get tested for it. Early detection and treatment are crucial in managing thalassaemia and improving the quality of life of the people affected by it. By raising awareness and educating ourselves we can help support the lives of those affected by thalassaemia.
