Thalassaemia ….., this word may still seem strange to some, but now increasing numbers of people with Thalassaemia in Indonesia. Thalassaemia itself is a blood disorder caused by insufficient production of hemoglobin (red blood cells) caused by the disruption in the process of chain formation of red blood cells because of damage to genes in the body. So for people with Thalassaemia, the only way to increase the amount of hemoglobin (Hb) in the blood is by way of a blood transfusion either continuously or from time to time depending on the type experienced Thalassaemia.
Thalassaemia is a genetic disorder, so it can be passed down from parent to child, although not to the whole child. For couples who turns each have a gene carrier (carrier) Thalassaemia, then it will have the possibility to have children who are patients of Thalassaemia as much as 25%. For more details can be viewed at the following chart:
According to the WHO in 1994, the number of people who have a carrier or carriers of Thalassaemia genes in the world reached 4.5%, or about 250 million people, of which 300 thousand children suffering from Thalassaemia are born each year and of that number about 60-70 thousand of which are β Thalassaemia major patients who require blood transfusions continuously since the diagnosis even though the baby. And the number is increasing so that based on data from WHO, the number of carriers in 2001 represented 7% of the total world population.
So as to further enhance public awareness of the disease Thalassaemia, then on Tuesday, December 29, 2009 held at Jakarta, held a press conference event on The Thalassaemia Ambassador or ambassador Thalasaemia. Thalassaemia ambassador program is a joint program of PT. Novartis Indonesia with Orange for Kids organization which aims to provide education from patient to patient, thereby increasing the life expectancy of patients with Thalassaemia. In this program, which is also an ambassador Thalassaemia Thalassaemia patients will provide education to the other patients to improve adherence to undergo blood transfusions and iron chelation also take medication regularly and motivate patients to continue to have a zest for life and have a good quality of life as well as useful in everyday life.
Concern for Thalassaemia disease and the sufferer can be done by any person, whether through education about the disease and by the way do not stay away from the sufferer.