x Abu Dhabi, UAESunday 23 July 2017

Winning the battle against thalassaemia

Emirati, 28, does not let his illness get in the way of a full life.

Despite a drop in the number of registered cases of thalassaemia in the UAE, Dr Ghazi Omar Tadmouri, the assistant director of the Centre for Arab Genomic Studies, said that more time is needed for the region to witness a significant improvement.
Despite a drop in the number of registered cases of thalassaemia in the UAE, Dr Ghazi Omar Tadmouri, the assistant director of the Centre for Arab Genomic Studies, said that more time is needed for the region to witness a significant improvement.

DUBAI // One of the 1,000 patients registered with the Dubai Thalassaemia Centre, Jamal Hussein Abdullah Al Hammadi, was happy to hear about the decreasing incidence of the blood disorder thalassaemia in the country, as reported in yesterday's The National.

"Of course it's great news. It's a positive thing for me and makes me hopeful for others. I think awareness had an important role to play," he said. "People now know about thalassaemia and understand what it is. They know what can be done to treat it, and more importantly, how to prevent it.

"I can already see the difference among my group of friends."

However, the Emirati insists that the blood disorder should not prevent others in his situation from pursuing their ambitions.

"I see it as something natural," he said. "Not as something that should stop me from living my life."

Mr Al Hammadi, 28, receives a blood transfusion at the thalassaemia centre in Latifa Hospital (formerly Al Wasl Hospital) every three weeks to increase his low haemoglobin levels.

Overall, the number of people registering at the centre each month has halved since a medical and educational campaign began in 2005.

And while Mr Al Hammadi feels normal during the intervals, the days before a transfusion are often filled with bouts of fatigue.

"I get a little tired, and sometimes I feel back pain," he said. "But once I receive the transfusion, I feel much better the following day."

To reduce the accumulated iron in his blood, a result of continuous transfusions, Mr Al Hammadi had to sleep with a needle attached to his hand for 10 to 12 hours a night until three years ago.

Doctors have since prescribed a daily tablet that achieves the same results.

"It was such a relief to go off the injections," he said. "Imagine having a needle in your body for 12 hours, it was very difficult. I got used to it slowly, but it never becomes something you can fully adjust to."

Mr Al Hammadi said the support of his wife and two children has helped him through the most challenging phases of his disease.

"I wouldn't have been able to reach this stage without their help," he said.

He works at Dubai International Airport and his hobbies include roller-skating and biking. He does not let his illness get in the way of his life.

"Sometimes the doctors are so impressed, they think I'm lying about how I feel," he said. "What other thalassaemia patients must understand is that with education, treatment and determination, they can lead a normal life."

According to figures from the latest study in 2006 by the March of Dimes foundation, the UAE ranks sixth worldwide in birth defects, with nearly 76 of every 1,000 live births affected. It comes behind Sudan, Saudi Arabia, Benin, Burkina Faso and the Palestinian Territories. The report is the first to provide a global estimate of birth defects of genetic or partly genetic origin. Congenital heart disease, neural tube defects and haemoglobin disorders, such as thalassaemia, were among the most common.

Dr Ghazi Omar Tadmouri, the assistant director at the Centre for Arab Genomic Studies, said the study was "exhaustive and conducted over a long span of time".

The centre is building a database of common genetic diseases in the Arab world. And despite reduced rates of thalassaemia in the UAE, Dr Tadmouri believes that more time is needed before the region witnesses a significant improvement.

"Scientifically, we don't believe that a change can occur all of a sudden," he said.

"You need to at least give it lapses of five years. And I don't predict any sudden differences that may occur soon."

mismail@thenational.ae

For an overview of thalassaemia in the UAE, visit bit.ly/thaluae