Of blood and courage: Rokeya’s life with thalassemia

Publié: 16 juin 2014 10:33 CET

By Himadri Ahsan, IFRC, Bangladesh

At the foot of a 22-story garment factory somewhere in the middle of a bustling Dhaka city, Rokeya’s husband, Faruk, waved at me. He took me to his sister’s house behind the factory, where they were staying for a week for Rokeya to receive her monthly supply of blood from the Red Crescent blood centre. 

Rokeya sat me down on a large bed, next to her sleeping child, 2-year old Mithila. With my borrowed knowledge from Wikipedia in a hurry that morning, I couldn’t immediately tell Rokeya acting any differently from any active 27-year-old woman – until she looked at me and her unusually yellow eyes caught me off guard. Rokeya smiled and pushed a serving of ripe mangos toward me, so I could lower my gaze and appreciate her hospitality for a few minutes.

“I come to Dhaka frequently to get blood ever since I was diagnosed with thalassemia in 2006. My brother had it too, and he died two years ago. I’m lucky to have received more treatment than him, because times have changed and people are more aware of this disease. My brother only received amulets from local imams until much later in his life when he started receiving proper medical attention – but it was too late. My father’s death followed my brother’s – from the shock of losing the only son after five daughters.”

Mithila wakes up at this point and adjusts to her reality with a stranger sitting next to her. Rokeya pulls her daughter closer and continues, “Mithila was born in the same year I lost my brother and father. She made it easier for me to look forward to life. As a thalassemia patient I must receive blood from donors, but in doing so I receive an excess of iron through the transfusion. It can be scary knowing that the very process that is saving my life can kill me.” 

Though there are drugs that help her excrete iron, the sad fact is that not all the iron exits the body. As a result, iron deposits form in the pituitary gland, the liver, the pancreas, and eventually, the heart.  So while the patients of thalassemia usually do not die from lack of functioning blood cells, they eventually die from heart complications caused by the iron.

“Sometimes I feel hopeless and wish my life was like other young people my age who are thriving, working hard and just living without fear. That’s when I look at my daughter. I live for her and dream of her growing into an intelligent and independent woman – one that I could have been…” her voice quietens as she uses her dupatta to muffle her sobs. 

Faruk was right outside the door, and he quickly comes in so Rokeya could leave for a few minutes to gather herself. What is life like as a husband of thalassemia patient? “Honestly, I was a little disappointed; it was an arranged marriage after all. She was diagnosed with the disease after the marriage. At that time, my elder sister, who is also a doctor, said that you don’t just abandon a human being like an object. And so I stuck around. It’s been eight years since we’ve been together and now have a daughter to raise. My family, who have lived all their lives in village, surprises me every day by showering their love for my wife despite her disease. Somehow Rokeya and I didn’t become bitter despite the disease that has become part of both our lives,” says a smiling Faruk.

It was time for me to leave them so they could prepare to go to the blood centre. “It takes the entire day for the transfusion process, but we trust Red Crescent and wouldn’t go to other places that offer to take less time. Red Crescent takes care to process the blood so that there is less iron in it, and I feel healthy for a longer time. I can’t thank the donors enough who make sure that there is enough blood for patients like me. Without their generosity life would have been much shorter for us,” says Rokeya, pausing for a moment from packing her bag.

I leave with a picture of the small family preparing to go out, as if for an excursion, with Mithila dressed in a bright yellow frilled frock. Courage helps them to accept life’s gravest misery and enjoy the ride anyway.

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