The UAE Genetic Diseases Association is working to eradicate the blood disorder thalassaemia and raise awareness.
A silent threat
On the outside, the green, manicured campus of Sharjah Men's College of Higher Technology is almost silent. But inside the light-filled cupola of the cafeteria, young men are quickly accumulating around a rectangular table. They are there to get blood tests. The UAE Genetic Diseases Association has come to their school to perform free screening for thalassaemia, a disease that one in 12 Emiratis carries. The association is full-swing into their most recent campaign, called Emirates Free of Thalassaemia by the Year 2012.
Thalassaemia is the name for a group of blood-related genetic disorders that affect the production of haemoglobin. These range from mild anaemia to Cooley's Anaemia (thalassaemia major), where patients require monthly blood transfusions for their entire lives. The disease is present in all of the countries of the malaria belt, from the Mediterranean to Africa and South Asia. Unlike thalassaemia sufferers, who start exhibiting signs of illness between three and six months old, carriers of the thalassaemia gene don't have any telltale symptoms. Because it is a recessive gene, many people go through life without realising that they pose a risk to their progeny. If both parents are carriers of the thalassaemia gene, there is a one in four chance in every pregnancy that the child will have some form of the disease.
According to the Genetic Diseases Association (GDA), a non-profit laboratory and outreach group that specialises in genetic diseases, thalassaemia can be prevalent in certain ethnic communities because of advanced maternal age in places where is it common to bear children until menopause, or because of marriages that take place within the same family, which increase the chances that two thalassaemia carriers will pass the disease on to their child.
The GDA says that 50 to 70 children are born with some form of thalassaemia each year. The current campaign aims to ensure that, by 2012, no babies will be born with thalassaemia. It is already well on its way to reaching the goal. The founder of the GDA, Dr Mariam Matar, realised the scope of the thalassaemia problem when she was working at the Dubai Women's College clinic. While treating students there, Matar found that one third of the student body had anaemia and other blood-related disorders. Her mission to help educate people about blood-related genetic disorders grew out of that discovery.
"We started as a campaign, and then we found out there was difficulty for people to be screened," Matar says. "People were calling me saying, 'Doctor, where should we go? You did the awareness for us, now please make it more accessible to go and do the testing'." Matar received funding from Sheikh Nahyan bin Mubarak, the Minister of Higher Education and Scientific Research, and from private patrons to create the GDA's state-of-the-art laboratory in 2006. In March last year, the lab, which is located in the Dubai Women's College, began testing for thalassaemia.
On a recent afternoon, six staffers were busy with tests, walking around the lab and working on their computers. This is the GDA's home base where (along with the college visits) anyone, whether they are an Emirati or an expatriate, can get tested for thalassaemia for free. "If you test for only sickle cell and thalassaemia, as these are the most common here, it's going to cost Dh700 at a hospital," says Dr Mohammed Naveed, the director of the DGA's laboratory. "And insurance does not cover this because they are pre-existing and genetic conditions; Dh700 discourages many people."
From the original awareness programme in 2005, the thalassaemia-free project grew into legislation for the entire UAE later in the year. Anyone wishing to get a marriage license in the Emirates must first be tested for thalassaemia. However, this too, presented problems as engaged couples would come in only days before the wedding, sometimes causing great emotional strain if both people tested positive for thalassaemia.
Therefore, Matar tried to meet the public's testing needs by going to places where young singles can get tested well before marriage. Since April 2007, the GDA has visited colleges to screen young people, who can receive their results confidentially online. So far, the team has tested more than 5,000 people, but their goal dictates that they will need to test 30,000 Emiratis (not to mention any expatriates who walk in) by the 2012 deadline. Naveed says this number was chosen because there are approximately 15,000 students admitted to universities in the UAE every year.
But what about the youths who are not enrolled in higher education? "We will go to them," says Naveed. "We can take the screening programme to shopping malls. We've been doing that, actually." While schools are in session, the DGA focuses on students, but it has also done tests at companies including the National Bank of Abu Dhabi and the telephone company du. "When the colleges and universities are closed for summer breaks or other long breaks, we decided to keep ourselves occupied by going to the corporate sector," says Naveed. He adds that the DGA will be back in the shopping malls at the next holiday period.
The Sharjah Men's College of Higher Technology is not on break, though. The young men joke loudly and push each other, trying to get to the front of the line at the GDA's blood testing set-up. Three technicians, all trained nurses, prepare the test tubes and needles. But Mohammed al Shamsi, 21, is not lining up with them. He is just there to support his friends who are about to take the test. Shamsi has been struggling for years with thalassaemia. The type of thalassaemia that he has, beta thalassaemia minor, requires him to receive regular checkups to make sure his body is still producing enough red blood cells.
"I usually test every eight months to a year," he says. "I have had it since I was young and sometimes I face problems like bad nutrition." To look at Shamsi, you would never guess that he gets extremely dizzy and a bit jaundiced, something he says happens to him frequently. Shamsi is pursuing an IT diploma but hopes to go abroad to work on a bachelor's degree in hospitality services. He says that testing is important and he has been encouraging his friends to take the thalassaemia test while the GDA is set up in their school, though he says one friend is afraid of needles and hesitated before he sat down to give a blood sample.
Shamsi says he would want his future wife to be tested, even though he's not ready to settle down just yet. "I am not thinking about it. I am thinking about my education more and I might get married when I reach 25," he says with a smile. "I am still young; let me enjoy my life." The other young men in line to give blood seem unaware of how important the test result could be to their future happiness. Two married thalassaemia carriers can easily end up with child a who suffers from the disease, something that is not only emotionally and physically stressful, but also extremely costly.
"Thalassaemia is not just a disease that is difficult to manage - it is financially difficult at the same time," says Naveed. "It drains resources." The emirates of Umm al Qaiwain and Fujairah have endowed land to the GDA that will be developed and managed to create a long-term source of income for the project. This is crucial, since the GDA is planning to expand its work and is currently the only free-of-charge genetic testing and counselling service in the UAE.
"To be the only one who is looking after genetic disease, that gives us responsibility," says Matar. "My nickname is 'Umm thalassaemia'. To have this name, the Emirate's Mother of thalassaemia, gives me more responsibility to continue and progress." To get tested for thalassaemia, register online at www.uaegda.ae, which will give you testing locations and dates to chose from. You can also make an appointment at the UAE Genetic Diseases Association's Laboratory, located inside Dubai Women's College in the al Nahda Second district.