Before this disorder strikes your child...
A cruel twist of fate shattered 30-year-old Sneha's dream of a happy family. Before her husband's sudden death, both her children were diagnosed with Thalassemia, a crippling inherited disorder characterised by abnormal Haemoglobin in the Red Blood Cells (RBCs). Left without lifelong monthly RBC transfusion and perennially anaemic, they ran the risk of dying at a tender age.
Seventy-year-old Ibrahim Khan had a large family, most of his children and grand children marrying their cousins. But the chance discovery of Thalassemia in two newborns changed all that. Tests that showed 19 family members were “carriers” of the Thalassemia gene traits, rang a bell so alarming that Khan declared he wouldn’t let anymore intra-family marriages.
Khan’s decision, influenced by Bangalore-based Rotary TTK Blood Bank’s timely intervention, might have saved several lives. For, the 19 “carriers” had one Thalassemia-affected gene and another normal gene. Marriage with another carrier would have increased the chances of their children becoming full-blown Thalassemia patients.
The child could get an affected gene from one parent and a normal one from the other. That would make him / her a “carrier.” Receiving both normal genes would make the child normal. But if the child is a recipient of both the affected genes, he would be a patient, joining hundreds across the State in their lifelong struggle to survive!
The cost of managing Thalassemia through monthly transfusions works out to a prohibitive Rs 1.5 lakh per year. Medications are a must because continued transfusions could lead to many side effects; and the accumulated iron affects the heart, liver and growth of the child, explained Dr Latha Jagannathan, Medical Director & Managing Trustee, Rotary, Bangalore-TTK Blood Bank.
By the time a Thalassemic child is 15 years of age, he would have gone through about 250 blood transfusions, 4000 injections of desferioxamine (to combat iron accumulation) and a needle in his/her body for over 40,000 hours!
Offering free blood transfusions to about a hundred patients since 2009, the TTK Blood Bank (www.bmstindia.org, 080 25287903) had realized that awareness about Thalassemia was dangerously low even among families of patients. “Pregnant women reported only by their second and third trimester to the antenatal clinics, which was too late for any action related to prenatal diagnosis. The partners/husbands also showed poor acceptance for testing and follow-up action. This impacted on the willingness for counseling and follow-up with the affected families.”
To get quicker relief and appropriate blood for newborns, the Bank has now appealed to pediatricians and hematologists to refer the baby to them before regular transfusions are instituted. That would help in screening the extended family for “carrier” statistics and subsequent counselling.
The Blood Bank (also conducts free testing and genetic counseling for relatives of Thalassemia patients, besides free pre-natal test for pregnant women who are Thalassemia carriers. The Bank has around 500 phenotyped, special blood donors to find matched-blood for Thalassemia and other multi-transfused patients
Of the 600 relatives of Thalassemia patients who were tested at the blood bank, a high 40 per cent were found to be “carriers.” About two to five per cent of the population in the State could fall in that category. Countrywide, there are an estimated 30-40 million Thalassemia (affected gene) carriers –Amitabh Bachhan is one among them--, and every year approximately 10,000-12,000 children are born with Thalassemia Major. It is higher among certain ethnic communities where intra-family and intra-community marriages are common.