Which parent would imagine that their child could have a rare genetic disease? When 4-year-old Manav developed a right knee joint swelling that wouldn’t subside for a week, his parents simply took him to a local doctor’s clinic for treatment. A prescription for a painkiller and hot water bottle didn’t help, and when the doctor aspirated blood from the child’s swollen knee, the bleeding from the puncture site just wouldn’t stop. His worried parents rushed him to Paras HMRI Hospital, Patna for treatment where specialists administered AHF and a cold compress to control the bleeding. Investigations revealed that this 4-year-old was suffering from a disease called Hemophilia, a rare, lifelong bleeding disorder caused by partial or total lack of an essential blood clotting factor, which results in excessive and often uncontrolled bleeding.
India has the third largest population of hemophiliacs in the world. Though this disease is genetic, one-third of new cases have no family history. Hemophilia A is the most common form, also referred to as classical hemophilia, and results from a deficiency in clotting factor 8. In severe hemophiliacs, even a minor injury can result in blood loss over many days or weeks. Healing may be delayed and internal bleeding in the brain or joints can be fatal. Regular injections of Factor 8-AHF are required to control classical hemophilia.
Paras HMRI Hospital, Patna, has a full-fledged department with diagnostic and treatment facilities to manage hemophilia. Though Manav was fortunate to get a diagnosis in time, lack of awareness about hemophilia among the general public is the norm. Many hemophiliacs don’t even know that they have the disease and discover it only when it has advanced and led to dire consequences. “Effective manag
In Bihar, Dr. Avinash Kumar Singh is the only DM Hematologist of the state. He further shares, “Lack of awareness is a major aspect. Reportedly there are more than 1.5 lakh hemophiliacs in the country however only 16000 are registered with the Hemophiliac Foundation of India. Parents are not aware of the symptoms, there is negligence and most importantly people are not aware that in the majority of the states special provisions exist for the treatment and management of Hemophilia.”