The Hindu : Tamil Nadu News : They are normal, yet bleed

Online edition of India's National Newspaper
Sunday, Apr 17, 2005

Tamil Nadu

Tamil Nadu

They are normal, yet bleed

S. Ganesan

With no permanent cure for haemophilia, life could be traumatic for the patients

A COMMON BOND: A group of haemophilia patients get together to share their experiences. Photo: R.M. Rajarathinam

TIRUCHI: "Nobody would understand what my son's disability is. My child could bleed to death any moment, yet many would express disbelief, pointing out that he looked completely normal. We have all been totally stressed out under constant fear and uncertainty."

The outpouring of A. Lucas, a hapless father of a teenager from Manapparai in Tiruchi district sums up the predicament of most families with patients suffering from haemophilia.

With no permanent cure, life could be traumatic for the patients. It is a genetic disorder in which blood does not clot as easily as it does in normal human beings, due to a deficiency or absence of clotting factors. Men are the sufferers and women are the carriers. Bleeding, which could happen anywhere anytime, or be caused even by slight injuries. Repeated bleeding, unless treated promptly, could lead to progressive crippling, for the commonest spots of bleeding are muscles and joints of the arms and the legs. Eighty per cent of the patients suffer from disability of the leg and arm. Internal bleeding in vital organs such as the brain could even cause death.

Given the rareness of the disorder, haemophilia patients remain a marginalised lot. "I have to be careful in everything I do. I can't act or play like normal children in my school," says S. Madhavan, who has just appeared for the Plus-Two public examinations. Most parents dread sending their haemophiliac children to school, while adult patients face problems at workplace. Nicholas Paul quit his job as a Behaviour Modification Trainer following a "bad bleed" and the high cost of factors in Bangalore.

Going by the estimated prevalence rate of one per 10,000 people, management of the disorder is difficult given the scarce resources, lack of awareness and limited access to treatment. Government hospitals are not equipped to treat the patients.

Replacement of the missing factor (anti-haemophilia factors) is the most effective and safest form of treatment but expensive _ about Rs.6,000 for each bleed. A patient bleeds 10-12 times a year on an average.

For patients in this region, the Haemophilia Society of Tiruchi offers a lifeline. With the support of donors and the Haemophilia Federation of India (which imports the factors), the society supplies the factor concentrates to its members at Rs.2 a unit. Given the huge cost involved, members are supplied the factors only whenever they suffer bleeds. Prophylactic treatment (to prevent bleeds) with factor concentrates and recombinant factors, though ideal, is a distant dream in India, says Tara Sundararajan, president of the society. It supports 156 patients.

On the occasion of World Haemophilia Day, observed on April 17, these patients have only a few things to ask the Government: support in getting adequate supply of factors at affordable cost and including haemophilia in the Disability Act, which could open up better employment opportunities and also give them some concessions for improving their lot.

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