Experts chalk out measures to combat haemophilia
On World Haemophilia Day (17th April), healthcare practitioners and caregivers have reiterated the critical need for early diagnosis, access to treatment, and physiotherapy for people with haemophilia to lead a near-normal life. Haemophilia is a hereditary genetic blood disorder that impairs the body’s ability to control blood clotting. People with this disease 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.
Haemophilia is usually of two types first one is called Haemophilia A and other one is Haemophilia B. The most common type of Haemophilia is called Haemophilia A.. Patients with severe haemophilia A constitute nearly 70% of patients. It occurs in 1 in 5000 males while Haemophilia B in 1 in 20000. Though considered as an inherited disease, around 30% of patients do not have any history of family members with haemophilia making it very difficult to identify the condition. While a person can present haemophilia later in life, majority of cases can be diagnosed in childhood itself, especially the severe ones can be identified when they start crawling.
According to experts, treatment for haemophilia 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.
Said Dr Sunil Bhat, Senior Consultant & Head of Paediatric Haematology, Oncology and Bone Marrow Transplantation, Mazumdar Shaw Cancer Centre, Narayana Health City,“Over the years, awareness about the disease and the treatment has advanced, however, taking good care of the body can go long way in reducing casualty owing to the condition. Some of healthy living tips for patients with haemophilia are:getting an annual comprehensive checkup, get vaccinated—Hepatitis A and B are preventable, treat bleeds early and adequately, exercise and maintain a healthy weight to protect your joints, get tested regularly for blood-borne infections and prophylactic factor replacement to prevent bleeds is strongly advocated.”
While haemophilia cannot be cured, patients can lead a near normal life through prophylaxis treatment. Prophylaxis, essentially replacement of clotting factor on a regular basis, helps the blood to clot normally in case of an injury or bleed. The treatment prevents bleeding and joint destruction, helping children with haemophilia be more active, attend school, go for outdoor games and above all, follow a routine life which every child wants to live.
With easy access to factor replacement therapy and physiotherapy, Haemophilia patients – especially children – can fight this life-threatening blood disorder. The risk of death from lack of basic knowledge and untreated haemophilia 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 Savita Rangrajan, Haematologist, J J hospital, Mumbai, “I would like to highlight the critical role of early diagnosis and access to adequate treatment in to give these children a near normal childhood and a pain free life for the future. Pre-emptive Physiotherapy plays an important part in ensuring that the joints remain healthy.” The society and the Government need to work together to fight this condition, which can sometimes be fatal in the absence of adequate knowledge about the disease and lack of appropriate and adequate treatment. “Just as the Government has a responsibility to provide adequate factor concentrates, the patients have an equal responsibility in managing their condition and therefore all patients should be seen by haematologists with experience in managing patients with Bleeding disorders on a regular basis. Whilst haemophilia bleeds can be treated with on-demand factor therapy, it is time to move towards prophylactic infusions of clotting factors for all patients to prevent bleeds,” she added.
Children are innocent victims of Haemophilia. 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 haemophilia is a life-long medical condition, without access to proper treatment, children frequently miss school and have to always be alert to injuries.
While there are Government facilities available for factor replacement therapy and disease identification, these are not spread uniformly across the county. However, a few centres in Uttar Pradesh and Gujarat provide personalised prophylaxis – the most optimised care for haemophilia. On the other hand, what is also urgently needed are trained doctors and Government support to extend access to factor replacement therapy at Government centres across India.
Speaking about the treatment, Dr Satish Kumar A, Consultant – Oncology, Columbia Asia Referral Hospital Yeshwanthpur, said, “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 factor is needed to stop the bleeding.” With an adequate quantity of treatment products and proper care, people with haemophilia can live perfectly healthy lives.