The 13th World Congress of the Thalassaemia International Federation (Tif) was held last week at the United Arab Emirates (UAE).
At the World Congress, Dr Eleftheriou, the executive director of the Thalassaemia International Federation made a call for governments around the world to take a more active role in dealing with thalassaemia.
“We call upon each and every government into which these disorders have even low prevalence, to build up national programmes for preventing and treating this disease, because contrary to many thousands of other diseases, these are treatable and preventable,” she said.
Dr Eleftheriou also praised the efforts of the hosting country in dealing with the disorder and said: “The UAE has recognised the importance of this disease. They have done so
from the medical point of view and from the public health point of view but, very importantly, they have also recognised the social and economic repercussions that these diseases can have if they are not appropriately addressed in a holistic way.”
Thalassaemia has a high prevalence in Mediterranean countries, and has since increased in Australia after the late 50s and 60s migration of Greeks and Italians. Due to the lack of awareness in Australia, preventative measures have not been as successful as they have been in Southern Europe. 80 per cent of couples in countries with a high rate of thalassaemia get tested before they have children.
The disorder causes anaemia, which affects the oxygen levels in the body. If the body does not receive enough oxygen, sufferers will feel tired, breathless, drowsy and faint. The most serious types of thalassaemia can cause other complications, including organ damage, restricted growth, liver disease and heart failure. In extreme cases it can be fatal. Paitients with Thalassaemia Major have to have blood transfusions every two to three weeks.
Panos Englezos, the president of the Tif, said at the World Congress that thalassaemia is one of the most common inherited blood disorders known to mankind.
“With more than 490 million thalassaemia carriers in the world, and in the absence of a comprehensive prevention programme, children with the disease will continue to be born, straining the medical, social and economic resources of many nations,” he said.
The main purpose of the event is to raise awareness of the condition, he said, and to put pressure on researchers to come up with a cure.
“There are some cases that can be cured, but we cannot say that we have the total cure for thalassaemia. It still remains a chronic disease,” said Mr Englezos.
The Foundation chairman, Sheikh Zayed bin Sultan bin Khalifa, said: “Thalassaemia is of significant concern in the Middle East because of a rapid increase in the number of cases over the past few years.”
He added that the foundation estimates that one in 12 people in the UAE are carriers of the disease.