Thalassaemia major is a geneitic, blood disorder which affects more than 1 lakh, children in the country. Children suffering from the disorder cannot produce haemoglobin, which carries the oxygen that to be breath in , to the various part of the body. These children are born with the disorder, and will survive only if given regular blood transfusion.and , the transfusion need to be given every 15 days on an average, throughout there lives.
Repeated blood transfusions result in an undesirable build-up of iron in the body, which can be fatal. The child has to take an injection every day to dispose off this excess iron. This injection is given by a special infusion pump, over a period of 8-10 hours every day. In most cases the injection is switched on before the child those to sleep and ditatched the next morning and oral drug has been developed for iron disposal which can replace the injection. This drug is relatively affordable. But the drug does not work with some children.
What is the situtation in Mumbai? There are almost 1000 children suffering from Thalassaemia Major, who receive blood transfusion at various day cares centres in Mumbai. These centres are attached through hospital or private clinics. The children are registered here and do not have to go through the process admission. On the day of transfusion, they are given the dates for the next transfusion. This helps in minimising the absence from school. Day Care centres monitor the child on every aspect of the treatment.
It is importance that days care centre, where the children have to go every 15 days on an average, are as comfortable as possible. A clean environment, air conditioning , television, Music system, reclining Chairs, Toys, Books,etc.. can make their painful visits to the day care centre as comfortable and pleasant as possible.
What is role of the Government? The Govt. of Maharashtra has been playing a very proactive roll in the fight against Thalassaemia. The government has a.ensured that all children suffering from Thalassaemia Major receive blood free of cost. For this purpose the government:- 1.Issued identity cards to all children. 2.Identified and instructed blood banks which will provide blood. b.constituted Thalassaemia committees in all district places with the objective of providing comprehensive treatment. c.Formed Thalassaemia clinics. The government is also supporting NGO’s , which are working in the field of Thalassaemia and assisting them in creating awareness about Thalasssaemia Minor.