The dark, dreary world of hemophiliacs

By Our Staff Reporter

HYDERABAD, JAN. 21. Pain pummels. The cold bones become a raucous honeycomb as blood keeps spurting out continuously, seldom stopping. Life for hemophiliacs is a strenuous flow of pain, day after day, year after year.

Suffering from a genetic disorder in which blood fails to clot normally causing prolonged bleeding even for a normal cut, hemophiliacs have to live with the ailment all along, being bed- ridden and immobile in a majority of cases.

"It's not a rupture of the blood vessel, but a leakage from the capillaries," explains the Chairman of the Southern regional council of Hemophilia Federation (India), Dr. Maganti Prasad, himself parent of a hemophiliac child. With the leakage difficult to plug - "the internal bleeding continues in the joints, muscles, gastro intestinal organs and even the brain" - the load bearing joints crumble. And with it, the patient's world.

The executive director of the Federation which has 60 societies spread all over India, Mr. Vijay Kaul, says the ailment is incurable, but definitely manageable. However, hemophilia care in the country which had close to a lakh of hemophiliacs was scarce. Andhra Pradesh alone accounts for about 8,000 hemophiliacs.

The treatment involves intravenous infusion of the anti- hemophiliac factor which is extracted from human blood. But, this was not made in India and had to be imported from the United States and some European countries like Austria, England and Italy. "There is a huge gap of supply and demand in India."

"Each vial of the anti-hemophiliac factor costs around Rs. 2,500 and the patient requires at least 20 shots every year," he said, adding that the prohibitive cost was a major deterrent in hemophilia care. He cites the example of a Varanasi-based couple who had five sons, all hemophiliacs, and the family income was just about Rs. 5,000 per month.

Government support to the hemophilia care was simply non- existent. "Every time we approach them, they brush it aside saying hemophilia was a small problem. When the patient's condition turns grave and operation becomes inevitable, no amount of running around Government offices for financial assistance either from the Prime Minister's Relief Fund or the Chief Minister's Relief Fund helps. The request is flatly denied on the pretext that the ailment is not listed for extending financial help," they lament.

Several hemophiliacs were getting disabled for want of help. "If left untreated, the disability of the person increases progressively. To top it all, they are faced with a social stigma and in many cases are affected psychologically too."

"If a hemophiliac is treated from the childhood itself, permanent damage can be avoided. Subsequently, the need for hospitalisation and infusion of anti-hemophiliac factor too," they say. In countries like the United States where hemophilia care was widely available, "the patients led a normal life and it was difficult to distinguish between a hemophiliac and a normal person."

Such was the apathy in the country that "even several practicing doctors were ignorant about the ailment." A memorandum was submitted to the Chief Minister, Mr. N. Chandrababu Naidu, by the Federation seeking support for hemophilia care in the State sometime back, but to no avail. "If only we provide them ample support at the right time, they can reach the highest of goals in life," the Federation leaders affirm.

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