Abu Dhabi – In a region where thalassaemia is a common genetic disease, parents of patients need to understand that marginalising their children from interacting normally with society can only lead to unnecessary developmental concerns, health-care experts said at a press conference in the capital today (Monday).
They encouraged parents to understand that the blood disorder, of which one in 12 people in the UAE is a carrier, is completely manageable with treatment and should hold no social stigmas.
“We have seen much progress internationally in how patients are treated and families are educated about thalassaemia. Many European nations also have screening programmes that help parents understand if their child is at risk of developing the illness. But we still find some parents who think that the disease is fatal, and who hide their children from society,” Dr Androulla Eleftheriou, executive director for B.Sc, M.Sc, PhD, Dip management at the Thalassaemia International Federation (TIF), told Gulf News.
“In fact, medical advancements have made thalassaemia a disease that is even more manageable than diabetes. Only in cases where families are not aware, thus preventing children from receiving the required treatment, are children at risk of dying before 15 years of age today,” she added.
Dr Eleftheriou was speaking on the sidelines of the press conference, which was attended by representatives from the Shaikh Sultan Bin Khalifa Al Nahyan Humanitarian and Scientific Foundation, and the awareness and research-oriented TIF. It was announced at the meeting that the 13th edition of the TIF World Congress, an educational event attracting international experts, will be held for the first time in the UAE between October 20 and 23.
In addition, the winners of the Sultan Bin Khalifa International Thalassaemia Award, a biennial prize established in 2011 to initiate educational, research and social support projects that support patients and their families, were also announced.
It is estimated that about seven per cent of the global population, or about 490 million people, are carriers of genes that may cause haemoglobin disorders like thalassaemia and sickle cell anaemia. Patients with thalassaemia, a blood disorder caused by variant and missing genes, make less haemoglobin, a protein in red blood cells that carries oxygen. As a result, they can end up with mild or severe anaemia without proper treatment, and can also suffer from iron overload, bone deformities and cardiovascular illness.
While carriers themselves have no related medical problems, the risk of developing thalassaemia, one of the most common inherited blood disorders, increases to 25 per cent when both parents are carriers. Patients require lifelong treatment, including regular blood transfusions and processes to remove iron from the body. According to the TIF, at least 15 million blood units are needed annually to supply these patients.
“Thalassaemia is of significant concern in the Middle East due to a rapid increase in the number of cases over the past few years,” said Shaikh Zayed Bin Sultan Bin Khalifa Al Nahyan, chairman of the Foundation.
The UAE Government provides free treatment for thalassaemia patients, and this was praised by TIF officials.
Dr Elefthriou also recommended that countries in the region establish national screening programmes which find out if individuals are carriers at a young age, as is practised in Cyprus and other European nations.
“In addition, parents should watch out for symptoms of thalassaemia, such as severe anaemia, reduced physical activity, paleness, and growth delays,” she said.
The upcoming TIF World Congress will see issues of concern to thalassaemia patients and their families, as well as medical advances in the field, being discussed.
“In the absence of a comprehensive thalassaemia prevention programme, children with [the disease] will continue to be born, straining the medical, social and economic resources of many nations,” said Panos Englezos, chairman of the TIF.
