The New Nation - Internet Edition

“When I brought Shabjal to Dhaka from Manikganj for his treatment, he did

not want to let go of my hand because he was afraid of getting lost.

My sweetheart is lost forever…Now wherever

I go I carry

this picture, I feel he is with me.”

Shahida Begum, Shabjal’s mother

(Shabjal, died of Thalassaemia, on 7th Srabon, 1414, at the age of 14)

Like Shahida Begum many mothers just live with the memories of their lost children and thousands of parents fight every moment to survive the ordeal of witnessing their children suffering from Thalassaemia.

“Ballads of the Agonized Souls” is a combination of some portraits and still-live images. The still-lives contain the memories of the lost souls and the portraits represent the struggling living souls who are on the edge of cruel-cool death.

Thalassaemia amidst us

Every year over 250 million people are affected by Thalassaemia and 100,000 Thalassaemia-majors (carriers) are born across the world. A survey by Bangladesh Thalassaemia Society states that Thalassaemia affects more then seven percent of the population today which means roughly 11.2 million Bangladeshis are Thalassaemia carriers and 7,483 children are born with the disease every year with expected 3,74,154 living patients.(31may, 2007)

Thalassaemia is an inherited blood disorder in which the body is unable to make adequate hemoglobin (Hb). Hemoglobin is present in the red cells. Normally red cells survive for 120 days. But red cells affected by Thalassaemia survive less than that. When both parents are Thalassaemia carriers their issues may become diseased. A person born with Thalassaemia suffers from chronic anemia. As a result their growth is stunted and without any treatment they usually die by the age of 5.

The only permanent cure for Thalassaemia is bone marrow transplantation which is a very expensive treatment and not available in Bangladesh. The best treatment available today consists of frequent blood transfusions (every two to three weeks) with iron chelation therapy. The only possible means of prevention is through Hb electrophoresis/carrier detection examination before marriage.

Photos & Text: Noor Alam / DrikNEWS

Text Edited By Humaira Fatima / DrikNEWS