Thalassemia: The growing challenge

Bengaluru: Making blood available for children with is is a growing challenge for Thalassemia care centers in the city. Normally, Thalassemia patients require 1-2 units of blood every 20 days or on a monthly basis. Unfortunately the problem is not being properly addressed.

Bengaluru alone has over 1,000 children afflicted with Thalassemia. These children are receiving treatment at various hospitals and Thalassemia care centers. City-based Sankalp India Foundation, is one such organization. Sankalp works voluntarily on managing blood for Thalassemia patients and runs a Thalassemia daycare centre at Indira Gandhi Institute of Child Health (IGICH). It also runs Samraksha at Rashtrothana Parishat in Chamrajpet.

Rakesh Dhanya, a volunteer with Sankalp India Foundation, said: “Since children with Thalassemia require component separated blood and saline washed red cells, making this available is becoming a challenge. Apart from our two centers, we also provide blood to other centers like the Thalassemia centre at Vani Vilas Hospital.

“At IGICH alone, we treat 200 Thalassemia victims and over 80 of them are at Samraksha. With better and more prompt availability of required blood, the Thalassemia patients in Western countries lead a longer life. Hence, we need to generate awareness about larger voluntary blood donation camps,” he stressed.

There are other factors, too, the primary one being financial. Since most Thalassemia patients come from lower socio-economic backgrounds, they often simply don’t turn up at the hospitals and day care units at which they have registered. Their parents have to give up a day’s earnings to bring them there. Of the 390 registered Thalassemia children at Vani Vilas Hospital, only 200 receive treatment regularly.

The nurse in-charge of the unit said, “A few of them may go to other centers like IGICH for treatment. We conduct regular in-house blood donation drives and if these are insufficient, we get blood from Rashtrothana Parishat.”

Yet another problem faced by Thalassemia patients is that after around 15 sessions of blood transfusions, they tend to accumulate iron and suffer from iron overload in the body, causing problems related to the pancreas and skin.

Dr Sanjiv GN, pediatrician taking care of the Thalassemia unit at IGICH said, “When it comes to Thalassemia, parents are among the major carriers, hence gene testing is necessary to prevent Thalassemia among children.