On World Hemophilia Day, healthcare practitioners and caregivers have reiterated the critical need for early diagnosis, access to treatment, and physiotherapy for people with Hemophilia to lead a near-normal life. With easy access to factor replacement therapy and physiotherapy, Hemophilia patients – especially children – can fight this life-threatening blood disorder.
The risk of death from lack of basic knowledge and untreated Hemophilia is very high. They also laid strong emphasis on government support to ensure availability of diagnosis facility, factor replacement therapy and physiotherapy at Government centres. According to Hemophilia Federation (India), there are over 20,000 registered patients with it. However, this number would be much higher, considering the population of India.
According to Dr. Ruby Reshi, Head of Pathology Department, Government Medical College, Srinagar: “On World Hemophilia Day, I want to highlight the critical role of early diagnosis and access to treatment in giving children a near normal childhood and life. Proper physiotherapy also plays an important part in ensuring that they remain active and healthy. The society and the government need to join hands to fight this blood disorder, which can turn deadly in the absence of proper knowledge about the disease and appropriate management. While Hemophilia can be treated with on-demand factory replacement therapy, prophylactic infusions of clotting factors can prevent abnormal bleeds.”
Meanwhile Hemophilia is a hereditary genetic blood disorder that impairs the body’s ability to control blood clotting. People with this diseases do not bleed any faster than normal but can bleed for a longer time. Their blood does not have enough clotting factor. Clotting factor is a protein in blood that controls bleeding. A serious disorder, it puts the patient at risk of death due to excessive bleeding. Awareness about the blood disorder and its management can make accessibility of appropriate treatment a reality for patients and save their lives.
Hemophilia is usually of two types first one is called Hemophilia A and other one is Hemophilia B. The most common type of Hemophilia is called Hemophilia A. This means the person does not have enough clotting factor VIII (factor eight). Hemophilia B is less common.
Children are innocent victims of Hemophilia. The fear of bleeding episodes, and mortality, prevents them from having a normal childhood, and takes a heavy emotional toll on their life and those of their parents and family. Since Hemophilia is a life-long medical condition, without access to proper treatment, children frequently miss school and have to always be alert to injuries.
The signs of Hemophilia A and B are the same: big bruises, prolonged bleeding after getting a cut, removing a tooth, or having surgery; spontaneous bleeding (sudden bleeding inside the body for no clear reason), bleeding into muscles and joints. Bleeding into a joint or muscle causes swelling, pain and stiffness in the joints, and difficulty using a joint or muscle.
Treatment for Hemophilia today is very effective. The missing clotting factor is injected into the bloodstream using a needle. Bleeding stops when enough clotting factor reaches the spot that is bleeding. Bleeding should be treated as quickly as possible. Quick treatment will help reduce pain and damage to the joints, muscles, and organs. If bleeding is treated quickly, less blood product is needed to stop the bleeding.