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For the cause of haemophiliacs

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The survival of poor patients is dependent wholly on charity. Facilities for these patients at government hospitals are woefully inadequate, this doctor tells R. Madhavan Nair

P.M. KuttyP.M. Kutty, haematologist, is looking forward to his retirement from the Paediatrics Department of Kozhikode Medical College Hospital.

Because it will launch his career that he wanted to pursue. He will then be a haemato-oncologist, a full-time specialist, engaged in social service.

He intends to take his expertise as a specialist in treatment of blood diseases to the doorstep of the poor. It is something he always wanted to do after he became aware of the gravity of the problems created by blood-related diseases in North Kerala.

"During a study I conducted in Wayanad with Dr. Rajagopal, another senior paediatrician, we realised the gravity of problems arising from haemophilia in this region," recalls Dr. Kutty.

In North Kerala alone there are nearly 3,000 haemophiliacs (Those who suffer from deficiency of an ingredient in blood that enables blood to clot; in its absence they might die of continuous bleeding).

Dr. Kutty is quick to add that their number might be higher. Only 3,000 haemophiliacs are registered with the Malabar Childhood Cancer - THAS-Haemophilia Society of which he is the president. In the Kuzhimana panchayat in Malappuram district, 40 male members of a single family are stricken with haemophilia. Prevalence of this disease is more in northern districts than in the other parts of the State. Though haemophilia incidence is more common among males than females, studies have shown that incidence of a type of the disease known as autosomal haemophilia is nearly 10 times more common among women than men.

Dr. Kutty attributed the higher incidence of haemophilia in North Kerala to marriages among close relatives, which is more common in the region.

"We are trying to convince people that consanguineous marriages should be avoided. Low female literacy and child marriages are the main obstacles to our campaign. Early detection of the disease is needed to prolong the life of the patient. Circumcision, dental extraction and other practices that might cause bleeding and might prove fatal to haemophiliacs should be avoided or performed with utmost care and caution," he said. "The problem is now a major social issue since most of the patients affected are poor and cannot afford the expensive medicines needed for its treatment. This is ironic because haemophilia was once considered a `royal disease'." A Russian Tsar had died of it and Queen Victoria was a carrier of the disease.

He said not much government funds were available either. Consequently, mortality rate among these patients was high. "The survival of the poor patients is dependent wholly on charity. Facilities for these patients at government hospitals are woefully inadequate." At the Noolpuzha panchayat, 50 children stricken with sickle cell anaemia are being given medicines by Vivekanda Medical Mission, a voluntary agency.

However, many more are in need of medication. There are many more patients in need of medicine at tribal-dominated Agali and Attappadi in Palakkad district, Nilambur in Malappuram and many places in Wayanad.

"Nearly three per cent of the tribal population needs medication," he said.

"The situation is so grave it is time to provide medical help at the patient's doorstep," says the doctor. To draw attention to the issue, the Malabar Childhood Cancer - Haemophilia Society has set up a website -www.pedblood.org. It has already evoked a good response. Help has started coming in the form of offers of medicine and equipment, which is all that the society is looking for.

Started 15 years ago, the society offers help to patients afflicted with thalassaemia, aplastic anaemia, haemophilia and sickle cell anaemia.

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