Rajinder Kalra was devastated when he learnt that his nine-month-old baby would need blood transfusion every 15 to 20 days. Reason: He had thalassemia, a genetic blood disorder in which body makes an abnormal form of haemoglobin, leading to anaemia. A person with thalassemia major needs blood transfusion every three weeks for survival.
“It was January 1991, and I had never heard of thalassemia. When doctors told me about the blood transfusions, I collapsed,” recounts Kalra.
Around 10,000 children are born with thalassemia major in India every year. At Postgraduate Institute of Medical Education and Research (PGIMER), two to three children are diagnosed with thalassemia major every week.
“Parents go into the state of shock and it takes them months to accept the medical condition. It is only when they come across other such families that they get some solace,” says Dr Deepak Bansal, Advanced Paediatrics Centre (APC).
Got Moral support from association
Kalra received moral support from an association, Thalassemic Children Welfare Association (TCWA), Chandigarh, which was started by a handful of parents of thalassemic children in 1987. Today, he is one of the leading lights of the association. And his son is a general manager in the hotel industry.
Kalra recalls how in the 1980s, thalassemic children were given little or no importance by the PGI. “Seen as a burden, they were given the least priority at blood banks. There was no specific place where these children could get blood transfusion,” Kalra recounts.
But all this has changed. Today, these children are provided all facilities under one roof, thanks to the efforts put in by this association of parents.
The society, which started with 89 children, has come a long way in the last three decades, and is now looking after 424 children.
APC has dedicated a separate ward to them where 25-odd children are given blood transfusion every day. The association has employed 10 members, including four staff nurses, for the management of these two wards.
“Patients no longer have to go to the blood bank to give samples for matching or to collect blood. This is done by attendants,” says Kalra.
The monthly expenditure on the disorder varies from Rs 5,000 to Rs 15,000.The association is financially helping more than 80 poor patients, who are not only exempted from monthly subscription, but also provided items required for blood transfusion free of cost.
To ensure that no child suffers for want of blood, the association organises more than 20 blood donation camps every year, and collects around 8,000 units, which are handed over to the blood banks at PGI and Government Medical College and Hospital-32.
Besides blood, the young patients also need iron chelation drugs. “The blood is a double-edged sword. While it is necessary for the life of the child, it contains iron that keeps accumulating in the body. So the chid also needs iron chelation drugs that cost around Rs 2, 500,” says Dr Deepak Bansal. He adds that if not given this therapy, a thalassemic patient can die at the age of 20 to 25.
The association spends around Rs 25.95 lakh a year to provide free iron chelation therapy to the needy. A philanthropist, who is associated with the TCWA, has adopted 20 children and bears the entire expense of their medicine.
Seeing their work, the then GMCH-32 director approached TWCA in 2012, and a new ward for thalassemics was established there as well.
Thalassemia can be prevented
Dr Deepak Bansal says thalassemia can be prevented. “Married couples should go for blood test to check if both of them are thalassemia minor or not. If yes, then during pregnancy, the mother should go for anti-natal test to check if the baby has thalassemia major,” says Dr Bansal. If the test is positive, the parents have the option of aborting the foetus.
Sukhsohit Singh, is a civil servant with never-say-die spirit. Sukhsohit, a Panchkula resident, became the first thalassemia major patient to join the Indian civil services.
It was not easy, as despite clearing the test, he was declared unfit by the medical board. Singh fought a long, hard battle with the system, which had no provision for people suffering from thalassemia.
After a year-long effort, he was finally inducted into the Indian Defence Accounts Services. Even though he’s bagged a secure job, Singh continues to soldier on for the rights of genetically disabled people.
Sukhsohit Singh’s association with the NGO dates back to 1994, when he was hardly 10-11 years old. He is still in contact with the NGO. “The association played a very important role, it gave me moral support. I believe every hospital should have such associations,” he says.
Diagnosed at 5
Milanpreet was diagnosed as thalassemic major at the age of five. But the cycle of transfusions never interfered with her normal life and studies. “Getting blood transfusion once a month is just a minor hiccup. Like we go out for a movie, I go for blood transfusion. It is that simple,” smiles Milanpreet.
In her schools days, she was very active in sports. She has played soft ball and cricket at the national level. Today, she is pursuing BDS at Dr. Harvansh Singh Judge Institute of Dental Sciences and Hospital.
“The TCWA is doing a wonderful job. They are very helpful, be it in providing medication or arranging blood. The staff is very motivating,” she says.