Life: Dealing with Thalassemia
Sabiha Hassan, who recently completed school, wants to become a psychologist. As she speaks from her hospital bed, a small sack of blood hangs on an IV pole and a tube is attached to her arm. A blood transfusion is in progress but she remains nonchalant — after all, this is something she has been doing ever since she was a two-month old baby.
Sabiha is a thalassemic major patient, one among many cared for at the Dubai Thalassemia Centre at Al Wasl Hospital. “I have blood transfusions every three weeks. The transfusions grew more frequent because I use more blood as I grow older. Of course, it is a little more difficult than leading a normal life, but I believe that we are all tested by God,” Sabiha says, leaning back on her pillow. She ensured the disorder never affected her studies. “I fix an appointment for the transfusion a day before or after the exams. I have had my friends coming over to the hospital and we studied together during exams.”
Sabiha’s assuredness makes doubts about thalassemia being a deadly disorder fade at this point… only to return during a chat with Dr Ahmed Mohammed Kadhim, Specialist Registrar, Thalassemia Centre. During the chat, it transpires that patients afflicted with thalassemia major have a short lifespan. “We do have patients approaching their 40s but with frequent blood transfusions there will be an iron overload in their tissues, which can damage the heart, the liver and the pancreas,” explains Dr Ahmed. And blood transfusion is a management, not a cure. “The only cure for Thalassemia is a bone marrow transplantation so that the patient’s diseased marrow can be replaced with a well functioning one.” The procedure is not currently performed in the UAE, Dr Ahmed adds. “After the procedure, the child will have a 95 per cent chance of leading a healthy life, free from thalassemia. Still, there is a 10 to 20 per cent chance of the procedure resulting in complications and a five to 10 per cent chance of death.”
Blood transfusions alone, in Dubai, cost about Dh 50,000 to 70,000 per year — this, not including the nurses’, doctors’, laboratory and other expenses. But at the Thalassemia Centre, Dubai, the expenses are covered by numerous charitable institutions and foundations.
To dispose the excess iron overload in the body of the patient, an injection must be administered to the patient through a special pump — five or seven days a week — which must remain injected for around eight to 10 hours every day. “But the problem is that patients do not comply with the need to use this because of the pain,” says Dr Ahmed. The long hours of use also makes the patient shirk the injection.
What sets thalassemia apart from most ailments is that awareness programmes do not target the patients — but rather the carriers of the disease, the thalassemic minors. While explaining the reason for this shift in focus, Dr Ahmed points out, “Carriers of the disease can live normally and will not show symptoms.” Hence, identifying these carriers through a special blood test is becoming an increasingly urgent need.
Couples planning to start a family should keep in mind that a diseased chromosome from one parent and a normal chromosome from the other have a 50 per cent chance of resulting in an offspring who is a carrier. And if both partners are thalassemic minors, there is a 25 per cent chance of their child being a thalassemic major — which is why a blood test should gain priority over any other plans before fixing a wedding date. Even as the doctor speaks, 17-year-old Raheel Saghir is a minute away from having a transfusion. After two nurses read out Raheel’s and the donor’s blood specifications (which included a ‘K negative’ — a blood subgroup), Raheel gets ready for his transfusion.
Born and brought up in the UAE, Raheel was diagnosed with thalassemia when he was a baby. Both his parents are thalassemic minors. “My 16-year-old brother has thalassemia major, too, but my sister is fine, mashallah,” says Raheel.
Having a brother with the same disorder has helped Raheel deal with thalassemia more easily. “We come for blood transfusions together,” he smiles.
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