Thalassemics are being dealt a double-blow, say patients. 
As if getting the disease was not enough, they also run the risk of losing their livelihood. 

And this is despite them being perfectly fit to work, says a leading authority on thalassemia in the UAE. 

“Although these patients need regular injections and medications, they are fit to work. Unfortunately, they not only have to fight the disease, they also have to fight society,” said Dr Khowla Bel Houl, Director of the Dubai Health Authority’s Thalassemia Centre. 

Lost opportunities

Thalassemia is a group of genetic blood disorders, basically, anemia caused by faulty synthesis of hemoglobin. Opportunities for those suffering from the disease is bleak. 

Saeed Al Awadi, 30, Board Member and Financial Advisor at the Emirates Thalassemia Society, and himself a thalassemic, said that of the 500 patients visiting the Thalassemia Centre in Dubai, 100 could be jobless next year. 

“Seventy per cent of these patients are adults and will require a job. Thalassemia-major patients are capable of doing any job, except working in the army or police, yet most companies do not hire them,” he said. 

In some instances, Al Awadi said that some companies even sack employees when medical tests reveal they are thalassemic. 

Thalassemia-minor carriers do not face this problem because their report does not show any blood disorder, said Al Awadi. 

“But companies slot thalassemia major patients in the same category of blood disorders such as HIV-Aids or hepatitis,” he said. 

The situation is, however, better in the private sector, said Al Awadi. “It’s because they want to fulfil their Emiratisation quotas and want us to fill seats rather than do our job,” he said. 

Obviously, job hunting for patients can be infuriating. 

Emirati Deema Badawi, 25, knows first-hand the frustration of fighting the disorder since 
childhood only to be discriminated against by employers who are averse to hiring thalassemics. 

For the past quarter of a century, Deema has had to undergo monthly blood transfusions, but that did not deter her from earning her degree. However, despite her personal victories, she found it extremely difficult to land a job. 

Deema worked for her father’s company but “stopped working there, because people perceived I got two days off every month because of my father’s position”. 

What they obviously didn’t realise was that the leave was medical; time taken to replenish her 
body with up to two bags of new blood. 

Shakeela Bashir, 26, a Pakistani expatriate and thalassemic said: “At every step of the way we have to prove ourselves. It does bring out the best in us, but makes life a constant battle.” 

Only an informed society can help break the chain of discrimination, said Al Awadi. 

“We still need to create awareness at all levels about thalassemia so that people’s misconceptions do not cloud their opinions about us.” 

Medical chart

Around 8.5 per cent of the UAE population are Thalassaemia (minor) carriers 
There are 1,200 patients thalassaemia (major) patients in the UAE 
Thalassaemia patients need a blood transfusion every four to six weeks 
Thalassaemics spend a minimum of Dh30,000 per year on treatment 
The UAE’s thalassaemia community will hold an awareness campaign on May 3 at Dubai Creek Park 

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