Prophylaxis (preventive treatment) is the best way to improve the quality of life of persons with haemophilia, says Suresh Hanagavadi, president of the Karnataka Hemophilia Society and former president of the Hemophilia Federation of India.
Speaking to The Hindu, Dr. Hanagavadi, Professor of Pathology, JJM Medical College, Davangare, says with prophylaxis we can significantly reduce disabilities in haemophiliacs and help them lead a life free of pain.
Haemophilia is a rare disorder in which the blood doesn’t clot in the typical way because it doesn’t have enough blood-clotting proteins or clotting factors. The bleeding is stopped by administering the missing clotting factors.
Prophylaxis for haemophiliacs is providing a preventive dose of anti-haemophilia factor in anticipation of or to prevent bleeding.
“Rapid control of bleeding episodes is crucial in minimising joint damage and preventing hemophilic arthropathy and long-term disability. This will help haemophiliacs lead a normal and active life with less pain, fewer hospitalisation and less time lost from schools or from workplace. The World Federation of Hemophilia stresses on prophylaxis and home management of haemophilia with constant monitoring by the haemophilia treatment centres,” says Dr. Hanagavadi, himself a haemophiliac.
Haemophilia without disability and children free of pain should be the motto. “My maternal uncle was a haemophiliac and my mother a career. My uncle was a victim of medical ignorance about haemophilia,” says Dr. Hanagavadi.
“I have seen his pain. He couldn’t attend school due to frequent episodes of bleeding. Doctors put needles into his knees, swollen due to internal bleeding, while he squirms in pain. Not many doctors were aware of haemophilia then. He used to tell me that I should become a doctor.”
“One day, I followed my uncle, who was suffering from severe headache, to the hospital. Though my uncle tried to convince the doctor that it was due to internal bleeding, the doctor insisted that it was a migraine attack and prescribed some painkillers. Struggling in pain, my uncle laid on a bench in front of the hospital.”
“This is why I want you to become a doctor, who can understand the pain of a haemophiliac,” he told me. He died after a few days.
“Even now haemophilia has not been dealt with in detail in medical education. There should be continuing medical education programmes for doctors about haemophilia,” Dr. Hanagavadi says.
All medical colleges should have a comprehensive haemophilia cell, with service of various specialists, including haematologist, pathologist, orthopedic, pediatrician and physiotherapist. With proper intervention from infancy, persons with haemophilia too can lead a normal life.
“Cost of anti-haemophilia factors is the main hurdle before governments to provide prophylaxis to all patients. Procurement of anti-haemophilia factors in bulk at the national level will bring more bargaining power with the factor producing companies. Thus, we can reduce the cost.”
Genetic counselling is another area, which has been neglected largely. Counselling is necessary to create awareness among families which have heredity of haemophilia. Marriages between close relatives increases the risk, he says.
Bringing haemophiliacs to the mainstream is the duty of society, he says.
