NGO offers a ray of hope to thalassemia patients

Fifteen-year-old Pragati’s father left her when she was detected with thalassemia, an inherited blood disorder which results in the formation of defective haemoglobin in the body. Pragati’s mother Sushma, who earns for the family, said, “ My husband left us because he did not want to take the blame and our daughter’s responsibility. After Pragati’s birth, even I took the thalassemia detection test and was detected with Thalassemia minor.” Sushma was aided by NGO Thallasemic India, which prevented her child from being a victim of the life-threatening disorder.

The only cure for the disorder is bone marrow transplant, which doctors say is very expensive. A transplant would cost a minimum of '10-15 lakh. The disorder can otherwise be controlled via blood transfusion and medicines. If the treatment does not start early, the patient may only survive till 5-10 years of age.

As per doctors, if both the parents have thalassemia minor, then there is a definite chance of their child being born with thalassemia major.

“A person with thallasemia minor leads a normal life like anyone else. It is the person with thallasemia major who has to undergo treatment,” said a doctor.

“One out of every 25 Indians are born a victim of this disorder, whose treatment is very expensive. 3.4% of the Indian population are suffering from the disorder,” said Dr V.K. Khanna, senior consultant at Sir Ganga Ram Hospital.

“A thallasemic patient needs 2 units of pax red blood cells every two weeks,” said Dr Khanna.

NGO Thallasemic India has till date cured 80 patients suffering from the disorder through bone marrow transplant. “We are providing medicines for the disorder completely free of cost for the underprivileged. The medicines are very expensive, hence we sell them at a subsidised rate,” said Shobha Tuli, secretary of Thallasemics India.