Helping improve lives of thalassaemia patients

Nineteen local and eight international awardees that include institutions, individuals, medical personnel and scientists who demonstrated remarkable achievements in medical research, health services and innovation in the treatment of thalassaemia were honoured on Sunday night at the first ever Sultan bin Khalifa International Thalassaemia Awards (SITA).

The award ceremony was held parallel to the opening of the 13th Thalassaemia International Federation (TIF) World Congress and the 15th TIF International Conference for Parents and Patients.

“Sultan bin Khalifa International Thalassaemia Award is a non-profit non-governmental organisation dedicated to valuable substantive efforts and contributions that have been made towards improving quality of life of patients with thalassaemia and other Hemoglobinopathies by individuals and institutions at a national, regional and international level,” said Shaikh Zayed bin Sultan bin Khalifa Al Nahyan, chairman of Sultan Bin Khalifa Al Nahyan Humanitarian and Scientific Foundation, during his opening speech.

He noted that SITA, which was initiated in partnership with TIF in 2011, is a “dream project” of Dr Shaikh Sultan bin Khalifa bin Zayed Al Nahyan, adviser to the UAE President and patron of the awards.

Foremost among those recognised was Shaikh Hamdan bin Rashid Al Maktoum, Deputy Ruler of Dubai and Minister of Finance, as Personality of the Year. He was awarded for his efforts in improving the lives of patients with thalassaemia, locally and regionally, through his generous support for the establishment of the first thalassaemia centre in the region in 1989 and for the establishment of the largest centre for thalassaemia in the Arab World in 1995.

He was also instrumental in the development of educational programmes that limited the spread of the disease in the country. The Hamdan Bin Rashid Award for Medical Sciences has made significant impact in enriching scientific research that contributed to the development of the treatment of thalassaemia.

Inspiring Individuals
A beta thalassaemia major patient, Shakeela Basheer, was recognised as the Inspiring Patient for her enthusiastic services for other thalassaemia patients while working at the Emirates Thalassaemia Society in the past six years.

Despite going through regular treatment and follow-up herself, taking care of herself did not deter her from extending support to others and her two younger siblings who were also diagnosed with the disease.

According to Basheer, she greets every single day with a positive attitude and considers herself as a normal individual, who is passionate about working strenuously for the welfare of thalassaemia patients.

With three daughters afflicted with thalassaemia - aged 19, 22 and 28 - Shaikha Al Wali was an Extraordinary Parent, dedicating every moment of her life to raising them, following their treatments and studies while volunteering in many educational, cultural and public campaigns related to thalassaemia.

For her research ‘Prevalence of transfusion-transmissible viral infections in UAE blood donors’, Dr Laila Al Shaaer, doctor of Philosophy in Molecular Haematology and director of Blood Donation Centre, Dubai Health Authority, was given the Best Research Publication award. Her work made great impact on reducing the side effects of blood transfusion.

Among the institutions, Thalassaemia Centre, Dubai was awarded the Medical Institute or Centre of Excellence. The centre was the first thalassaemia centre in the region and treated over 850 patients (both Emiratis and expats) with thalassaemia and other blood disorders for free.

Other Best Supporting Organisations include the Blood Transfusion and Research Services Centre, Sharjah; Dubai Blood Donation Centre; National Screening Centre for Women and Child Health, Abu Dhabi; and the Emirates Thalassaemia Society.

Thalassemia is one of the most common inherited blood disorders known to mankind. It is estimated that at least 12 children are born with thalassaemia every hour in the world. With over 490 million thalassaemia carriers in the world, in the absence of a comprehensive thalassaemia prevention programme, children with thalassemia disease will continue to be born straining the medical, social and economic resources of many nations.

olivia@khaleejtimes.com