Thalassemia, also known as Mediterranean anemia, is an ancient group of diseases that have existed for over 7,000 years.
The name thalassemia comes from the ancient Greek word for sea, thalassa, as the ancients believed it was an "illness that came from the sea".
In 1925, pediatrician Thomas Benton Cooley published a work on thalassemia. This was the first description of the disorder, and for a long time it became known as Cooley's anemia.
Traditionally, beta thalassemia major is particularly prevalent in a belt stretching from West Africa through the Mediterranean, the Arabian Peninsula and the Black Sea to India, South China and South-East Asia. However, due to global mobility in modern times, sufferers are now found nearly everywhere.
Throughout the world, it is estimated that 4.6 million children and adolescents are affected by thalassemia and every day hundreds of babies are born with this inherited disorder. A high number of carriers of the thalassemia genetic trait are found in countries where marriage between relatives was, and still is, common practice and in third-world or emerging countries. Little or no schooling, social or religious stigmatization, and a lack of useful information and education all help to spread this genetic disorder. In many cultures, sick children, particularly girls, are often hidden away, abandoned or killed.
Every year, thousands of young families are plunged into emotional turmoil and economic hardship when medical care is not obtainable or, for that matter, affordable.