Thalassaemia is one of the most common genetic blood disorders, affecting millions of people worldwide. In the UAE, an estimated 3,000 people of different nationalities suffer from the disease.
Although the number of cases has dramatically fallen in this country over the past few years – thanks to the availability of quality treatment and prenatal diagnosis – lack of public knowledge and awareness pose major barriers to eradicating prejudice against carriers.
As in the case of many other ailments, inadequate knowledge can lead to unnecessary anxiety among the people, and that might have profound emotional effects on the carriers of thalassaemia.
As The National reports today, almost all thalassaemia patients find it impossible to get jobs in the private and public sectors. "This is because they need a maximum of two days a month for blood transfusions and employers don't want that," pointed out Abdul Baset Merdas, the vice president of the Emirates Thalassaemia Society.
The psychological impact can be understood from the comments of Shakeela Bashir, a patient and administrator at the society. “Many patients are very excited about getting a degree but when they find that they can’t get a job because of their condition, they start having psychological and social problems,” she said. “They stop taking care of themselves and lose all hope. It’s a huge setback for them.”
Luckily all this might be about to change, as the organisation plans to make recommendations for a law that will make it mandatory for sufferers to be included in the workforce.
To be sure, thalassaemia does not impair one's ability to work. Thalassaemia patients are able to function in the workplace, and contribute to society, as well as any other individual.
Education and campaigns are necessary to dispel misconceptions about the disorder. A shift in attitude will help these people forget the burden of having a chronic disease and make them realise that the treatment they have to follow brings more quality to their lives than trouble.
These objectives can be achieved if the private and public sectors accommodate thalassaemia patients and allow them to contribute to the quality of the workforce.
