Dubai: One in 12 people in the UAE suffers from thalassaemia. If this fact is not disturbing enough, here’s another: The numbers of thalassaemia patients in the UAE are growing and this can be attributed to the tendency of to-be married couples ignoring the basic precaution of undergoing the mandatory premarital check-up.
If either partner is a carrier (of the thalassaemia gene), counsellors recommend they should not get married as the baby is in danger of inheriting the more virulent form of the disease.
“A carrier [of the defective gene] does not have symptoms, but when he or she marries another carrier, the risk of having a child with a serious version of thalassaemia increases,” said Dr Essam Dohair, coordinator at the Dubai Thalassaemia Centre.
If a couple ignores the counsellor’s advice, the results are severe — the baby is born with thalassaemia which is acute enough to require blood transfusions every three weeks.
Wrong belief
One of the factors which weighs in heavily against transparency regarding thalassaemia is the long-held belief of patients that it is a contagious disease, which led them to conceal it.
This resulted in complications in treatment. Dr Dohair believes that the more people afflicted with this condition are educated about it, the more compliant they will be regarding treatment. “A compliant patient [who follows doctor’s advice] can lead a relatively normal life,” he said.
The other side of the story is that there are many people who believe that thalassaemia is infectious and as a result they avoid interacting with thalassaemics, a perpetuating syndrome that enables discrimination to take deeper root.
Thalassaemic patients also face discrimination in the job market and in many cases are denied employment due to their condition.
The belief of employers, said Dr Dohair, is that they will get sick more often, leading to loss of work hours. But there is a silver lining in this perception as many companies wake up to the real issue of thalassaemia and realise that people who are afflicted with it can perform jobs just as efficiently as others if they avail of timely treatment.
Some private sector companies, he said, are beginning to offer them flexible timings to enable them to undergo the required blood transfusions.
Bone marrow transplant
While regular blood transfusions remains the only form of treatment in the UAE, thalassaemia patients can be cured with a bone-marrow transplant, a procedure that is currently not available in the UAE.
And if a patient opts to travel overseas for the bone marrow transplant, he needs to find a good donor match (as with all transplant procedures) first before the procedure is carried out.
In a transplant of this nature, the faulty bone and marrow stem cells are replaced with healthy ones from the donor. (Stem cells inside bone marrow make red blood cells and other types of blood cells crucial for the body’s health).
