Rohin explains the routine in a matter-of-fact manner. ``First they pierce me with a needle. Then the filter is put and a blood bag attached. There is a bit of pain, but what has to be done, has to be done,'' he says.

Stoicism comes early to the more than 1,00,000 thalassaemics in the country. Many need transfusions as early as when six months old. This is the official figure, and there are many more unreported cases. Over 8,000 reported thalassaemic births take place every year in the country. A preventable disorder, thalassaemia still occurs because of the hard fact that approximately 6 per cent of the country's population is a carrier of the thalassaemia gene.

The tragedy of a patient of this geneticdisorder lies in the fact that he or she need never have been born. If the parents had undergone screening and had been diagnosed as carriers of Thalassaemia Minor and the pregnancy terminated in case the foetus was diagnosed as suffering from the disorder, there would be no thalassaemic patients.

If both parents are carriers of Thalassaemia Minor, their children may have Thalassaemia Minor, completely normal blood, or Thalassaemia Major. In each pregnancy, there is a 25 per cent chance that the child will have Thalassaemia Major. For most families in a developing country like India, treatment of thalassaemia is prohibitively expensive. The costs work out in the range of Rs 8,000-10,000 a month, and yet don't ensure complete normalcy. Worse still, facilities for treatment are not available in most parts of the country. There is also a high risk of infections during transfusions since most patients do not have access to Red Cross blood banks.Thalassaemics India, a Delhi-based, non-profit organisation,focusses on creating awareness about thalassaemia and mobilising resources for the benefit of needy patients. ``We provide family counselling and guidance to the parents of Thalasssaemia Major children, advising and educating them on the proper management and control of the disorder and in the socio-cultural psychological aspects of living with thalassaemia,'' says Poonam Anand, executive member of the organisation.

Children afflicted by Thalassemia Major cannot produce enough haemoglobin. They require frequent blood transfusions, which lead to accumulation of excessive iron in the heart, liver and other organs of the body. ``The only way to control this deadly iron overload is to give them drugs known as iron chelators. Another option is administering Desferal injections. Manufactured by Novartis, these injections cost Rs 1,410 for a pack of 10. The infusion kit needed to inject these cost Rs 11,000,'' says Anand.

Every time you go for a transfusion, there is additional expenditure. At the Preeti TuliThalassaemia Unit at the Sir Ganga Ram Hospital, for instance, a filter necessary to curb infections costs Rs 510. A Hepatitis C test costs another Rs 120 and the hospital charges are Rs 220. ``Thalassaemics India is supporting 27 families with one or more such patient. We also help the parents of Thalassaemia Major children in procuring life-saving equipment, not available in the country,'' says Anand.

In cooperation with the Sir Ganga Ram Hospital, the organisation has also set up the Preeti Tuli Thalassaemia Unit, where proper therapy, counselling and multi-disciplinary medical monitoring are provided. ``We are doing some efforts, but considering the costs of treatment and care, we are now looking for corporate support,'' says Anand.

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