x Abu Dhabi, UAESunday 21 January 2018

‘Disabled have more rights than thalassaemia sufferers’, UAE patient says

Vice president of the Emirates Thalassaemia Society, Abdul Baset Merdas, will make recommendations for a law to be passed making it mandatory for sufferers to be included in the workforce.

ABU DHABI // A support group for thalassaemia patients has called for a law to guarantee employment for more of them.

“Almost all thalassaemia patients can’t find jobs because they need a maximum of two days a month for blood transfusions and employers don’t want that,” said Abdul Baset Merdas, vice president of the Emirates Thalassaemia Society.

About 3,000 people of different nationalities suffer from the condition, and the society will make recommendations for a law requiring them to be included in the workforce.

Thalassaemia is a group of inherited blood disorders that affects the body’s ability to create red blood cells. Red blood cells carry a protein called haemoglobin, which transports oxygen from the lungs to the rest of the body.

With thalassaemia, the bone marrow does not produce haemoglobin, causing anaemia. If the body does not receive enough oxygen, sufferers will feel tired, breathless, drowsy and faint.

The most serious types of thalassaemia can cause other complications, including organ damage, restricted growth, liver disease and heart failure. In extreme cases it can be fatal.

“Statistics show that one in every 12 in the UAE are carriers of thalassaemia. The exact number of patients is not available,” Mr Merdas said.

The society’s administrator, and a thalassaemia sufferer herself, Shakeela Bashir, 32, said patients who found employment were usually soon dismissed because of their condition.

“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. They stop taking care of themselves and lose all hope. It’s a huge setback for them.”

Thalassaemia patients, she said, need support. “They need the opportunity to prove themselves,” she said.

“Depending on the case, patients will need a day or two every month, or every three weeks, for blood transfusions. Other than that, they are completely normal and active.”

Emirati thalassaemia patient Abeer Al Naqbi, 29, spent two years looking for a job after she graduated from Zayed University in 2009.

“In general, it is difficult for people to find jobs but it is even harder for us,” she said.

“I would pass every interview but my employment would always stop when the results of my medical check-up came out. I finally got employed in a government entity in Dubai because my employers were aware of the disease, and they were understanding.”

Amal Al Saedi, a 26-year-old thalassaemia sufferer, has been in training for the past three years at a government department.

“Probation or training periods last for three months. In my case, it’s been three years because they are refusing to giving me a permanent position because of my disease, even though I get top scores and excellent reviews in my assessment,” she said.

“I only wish they would at least treat me as they do the disabled. They have more rights than us.”

Ms Al Saedi said she was treated with pity by her colleagues.

“Initially, I didn’t tell them that I had thalassaemia, but after I did the medical check-up everyone knew and started treating me differently,” she said.

“Suddenly everyone is reluctant to give me work and always want me to stay at my desk. I just want employers to understand that we are like normal people. There is nothing wrong with us and we can work as well as any other person.”