Thalassaemia organisation lauds UAE for its prevention work

ABU DHABI // The UAE has been praised for the work it has done to tackle a blood disorder that has rapidly increased in the Middle East in recent years.

Dr Androulla Eleftheriou, the executive director of the Thalassaemia International Federation (Tif), which is holding its World Congress at Abu Dhabi National Exhibition Centre this week, said the country has recognised how important it is to deal with the disorder, which is inherited and can cause anaemia and even death.

Speaking on the sidelines of the event, Dr Eleftheriou said: “The UAE is exemplary in the region and among many regions in the world because 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.”

Dr Eleftheriou also made a call at the 13th World Congress for governments around the world to take a more active role in dealing with thalassaemia. The congress runs alongside the 15th Tif International Conference for Parents and Patients, and together they attract about 2,000 delegates.

“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.

Thalassaemia 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.

Panos Englezos, the president of the Tif, said 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.

Abu Dhabi was chosen as the host for the congress primarily because of the efforts of the Sheikh Sultan bin Khalifa Al Nahyan Humanitarian and Scientific Foundation and the accomplishments of the UAE medical community in increasing awareness of the disease.

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.

Sufferer Amna Al Naqbi, 19, was at the event yesterday.

The Emirati from Ras Al Khaimah said: “I wanted to come here to know about the treatment and to see how the international thalassaemia community is dealing with thalassaemia in different cultures, what kind of developments there have been and what kind of medication people take in other parts of the world.”

The teenager has a blood transfusion every three weeks.

“My life is pretty much normal, except once a month I have to be absent from college to do the blood transfusion,” she said.

“I do all sorts of sports. I live a healthy life. One downside is that I have to do an injection every 24 hours.”

Her mother, Sheikha Al Wali, won the extraordinary parent prize at the Sultan bin Khalifa International Thalassaemia Awards held on Sunday night.

Mrs Al Wali, who has five children – three with thalassaemia and two who are carriers – often gives talks in hospitals and schools about the condition.

The Tif World Congress 2013 is being held under the patronage of Sheikh Mohammed bin Zayed, Crown Prince of Abu Dhabi and Deputy Supreme Commander of the Armed Forces.

ecleland@thenational.ae