Urgent need to establish dedicated Centres for Hemophilia

With increased awareness comes better diagnosis – World Hemophilia Day

Mumbai, April 17, 2019: On the occasion of World Hemophilia Day, experts emphasize on the urgency to establish services for hemophilia include training care suppliers, setting up dedicated centers, instigating registrations, teaching patients and their peers about the condition, and providing low-cost treatment, among others.

Rare diseases that go undiagnosed due to lack of awareness and adequate facilities, Hemophilia is a lifelong bleeding disorder that stops blood from clotting. People suffering from this disorder either do not have an adequate level of a specific clotting factor or it does not work correctly.

“Hemophilia is a genetically inherited blood disorder caused by a deficiency of Factor VIII (Hemophilia A) and Factor IX (Hemophilia B). Patients with Hemophilia generally experience problems which might exist from childhood. But Hemophilia may be uncovered in adult life too in some cases. Usually found accidentally on screening reports prior to other medical procedures. Severe forms, however, manifest in early childhood.” Says Dr.Nimish Kulkarni – Consultant- Hematology and Bone Marrow Transplant, Nanavati Super Speciality Hospital

Hemophilia A is more severely found amongst people affected than Hemophilia B. The biggest challenge faced with hemophilia diagnostics in developing countries is lack of awareness, scarce amenities, and limited factor focusing towards therapy.

Adding to this, Dr.Nimish elaborates, “Concentrates of clotting factor VIII or clotting factor IX respectively are slowly injected into a vein. These infusions help replace the clotting factor levels in the blood. Any unexplained prolonged bleeding after cuts or injuries, after vaccinations, frequent nose bleeds, blood in urine or stools, etc should be taken seriously and shown to a doctor.”

According to experts, patients with Hemophilia have a high risk of bleeding and only be prevented by routine monitoring and factor replacements. People having hemophilia and not knowing about it, may not have any other symptoms till they have an event of unexplained prolonged bleeding.

“If bleeding occurs in a vital area like brain and kidney the damage may cause a lot of related troubles and complications. Some bleeds may even cause a lifelong debility. With factor replacement injections, patients can lead a normal life with very limited risk of bleeding,” the experts concludes.