Prophylaxis (preventive treatment) is the best way to improve quality of life for people with hemophilia, says Suresh Hanagavadi, President of the Karnataka Hemophilia Society and Past President of the Hemophilia Federation of India.
Speak with The Hindusays dr Hanagavadi, Professor of Pathology, JJM Medical College, Davangare, says that with prophylaxis we can significantly reduce disability in hemophiliacs and help them live pain-free lives.
Hemophilia is a rare condition in which the blood does not clot in the typical way because it does not contain enough blood clotting proteins, or clotting factors. The bleeding is stopped by administering the missing coagulation factors.
Prophylaxis for hemophilia is the administration of a preventive dose of an antihemophilic factor in anticipation of or to prevent bleeding.
“Rapid control of bleeding episodes is critical to minimizing joint damage and preventing hemophilic arthropathy and long-term disability. This will help hemophiliacs lead normal, active lives with less pain, fewer hospital stays, and less time lost from school or work. The World Federation of Hemophilia emphasizes prophylaxis and home management of hemophilia with constant monitoring by hemophilia treatment centers,” says Dr. Hanagavadi, bleeders themselves.
Disabled hemophilia and pain-free children should be the motto. “My maternal uncle was a hemophiliac and my mother was a career. My uncle was a victim of medical ignorance about hemophilia,” says Dr. Hanagavadi.
“I saw his pain. Due to frequent bleeding, he could not go to school. Doctors stick needles into his knees, which are swollen from internal bleeding, while he writhes in pain. At that time, hemophilia was not known to many doctors. He always told me to become a doctor.”
“One day I followed my uncle to the hospital who was suffering from a severe headache. Although my uncle tried to convince the doctor that it was internal bleeding, the doctor insisted it was a migraine attack and prescribed painkillers. My uncle lay down on a bench in front of the hospital in pain.”
“That’s why I want you to become a doctor who can understand the pain of a bleeder,” he told me. He died after a few days.
“Hemophilia has not been extensively covered in medical education to this day. There should be medical education programs for physicians about hemophilia,” says Dr. Hanagavadi.
All medical schools should have a comprehensive hemophilia cell staffed by a variety of medical specialists, including hematologists, pathologists, orthopedists, pediatricians, and physical therapists. With proper intervention, people with hemophilia can also lead normal lives from infancy.
“The cost of anti-hemophilic factors is the biggest hurdle for governments to offer prophylaxis to all patients. Bulk sourcing of anti-hemophilia factors nationally will give factor-producing companies more bargaining power. That way we can reduce costs.”
Genetic counseling is another area that has been largely neglected. Counseling is necessary to raise awareness in families with hereditary hemophilia. Marriages between close relatives increase the risk, he says.
Bringing hemophiliacs into the mainstream is society’s duty, he says.