Bengaluru: India stands second in the number of hemophilia patients in the world, according to the World Federation of Haemophilia (WFH). But sadly, most of them remain undetected and undiagnosed, lamented city doctors.
The world marks the 28th World Haemophilia Day on April 17 and doctors see this as an opportunity to help people with bleeding disorders to live a healthier and longer life and to empower them with knowledge, in line with this year's theme "Sharing knowledge".
The country has around 17,000 hemophiliacs and of them, 2,500 are in the state. “Around 150 patients have registered in Bengaluru. But approximately 1,000 more are undiagnosed and unregistered. Being a very rare disease, many hemophiliacs don’t even know that they are suffering from the disease since their childhood,” said Dr Sachin Suresh Jadhav, Consultant Hematologist, Bone Marrow Transplant, Fortis Hospitals.
The medication (Factor VIII) used to control and prevent bleeding episodes in hemophiliacs is highly expensive which is beyond the reach of patients.
Dr Mahesh Rajashekaraiah, Consultant Hematologist, said, “Haemophilia is a disease with long-term morbidity and mortality. Very few patients have access to anti-haemophilic factor on time and the high cost has been the limiting factor. The government should intervene and provide free factors on demand for all patients and reduce the cost of the medication. More grants for research and working towards a complete cure should be the long-term goal.”
Haemophilia is a lifelong bleeding disorder that prevents blood from clotting properly. People with bleeding disorders either do not have enough of a particular clotting factor or it does not work properly.
Dr Manojith from Global Hospitals said, “There are very few centres in the city which perform surgeries on such patients.” Dr Sachin said, “If not diagnosed for a long time, hemophilia can cause irreparable damage to knee joints. The government should increase the detection process as not many know about the disease and the facilities available.”