DUBAI – The Thalassemia Centre in Dubai is pushing for legislation to make thalassemia screening programmes compulsory for those seeking admission to universities, a move aimed at tackling the most prevalent genetic disorder in the country.
The UAE’s only specialised centre that offers comprehensive tools for prevention, diagnosis and management of thalassemia has also put forward a suggestion to introduce compulsory community hours for university students to work with its officials and patients so that the former understand the blood disorder better and volunteer for getting screened.
One in 12 people in the UAE carry the gene for thalassemia, a blood disorder that reduces the number of red blood cells in the body.
The government has already made pre-marital tests for couples mandatory to help assess the chance of a couple having a thalassemic child.
Dr Khawla Belhoul, director of the Thalassemia Centre, however, pointed out that pre-marital tests are usually done at a very late stage and many couples do not want to back out from having a marriage even after knowing their carrier status.
“It (pre-marital testing) is not enough. It usually comes too late,” said Dr Belhoul.
“I think everybody should screen their kid. Your kid should know about himself before he gets involved (in a relation). The possibility of one backing out is much higher if he knows the condition before getting engaged or involved in a relation,” she told reporters on the sidelines of the launch of the centre’s websitewww.thalassemiacentre.ae or www.thalassemia-dubai.com on Sunday.
Though the proposals are to mandate thalassemia screening certificate at the time of university admission, Dr Belhoul said universities could at least impose it any time according to their convenience.
“They (students) don’t have to submit whether they are positive or negative or they are carriers. But they should know their status. What matters is that they are tested.”
Pointing out that students doing volunteer social work with the centre could have better knowledge about the disease, she said universities should also introduce community hours to be spent with the centre and its patients.
Since over 80 per cent of the affected patients are teenagers, she said, the centre is trying out modern electronic ways to get across the messages of prevention and early detection to the young generation.
The website that was launched by Shaikh Majid bin Mohammed bin Rashid Al Maktoum, Chairman of Dubai Culture and Arts Authority, is an important step towards this.
The website allows users to interact with each other and to leave comments and suggestions for the centre’s staff.
“When we talk to teenagers, we have to talk in their language. And that is what we are working on now. We are doing a lot on the internet…we are working on facebook and twitter,” said Dr Belhoul.
The Director-General of Dubai Health Authority (DHA), Qadhi Saeed Al Murooshid, who accompanied Shaikh Majid on a tour of the Thalassemia Centre, Dubai Cord Blood Centre and Joslin Diabetes Centre, said the authority was keen on providing easily accessible interactive forums which have information on diseases and their management, as it was crucial to further develop its patient communication systems.
The website will add to the centre’s already well-established patient communication system that uses SMS to alert its patients to treatment changes, appointments and the centre’s activities.
