Need to raise awareness, promote early diagnosis of haemophilia: JP Nadda

Boosting awareness early diagnosis and improving access to care is crucial to fight haemophilia and other bleeding disorders in the country said Union Minister JP Nadda on World Haemophilia Day on ThursdayWorld Haemophilia Day is observed every year on April 17 to raise awareness about bleeding disorders The theme this year is Access for all Women and Girls Bleed TooHaemophilia is a rare bleeding disorder where blood does not clot properly even in minor injuriesldquoOn WorldHaemophiliaDay letrsquos raise awareness about haemophilia and other bleeding disorders promote early diagnosis and improve access to carerdquo said Nadda in a post on social media platform XldquoThis yearrsquos theme ldquoAccess for All Women and Girls Bleed Toordquo urges us to recognise the unique challenges faced by women and girls and ensure inclusive equitable healthcare for allrdquo he addedOn WorldHemophiliaDay letrsquos raise awareness about hemophilia and other bleeding disorders promote early diagnosis and improve access to careThis yearrsquos theme mdash ldquoAccess for All Women and Girls Bleed Toordquo mdash urges us to recognize the unique challenges faced by women andhellip pictwittercom5OcMLdwIjVmdash Jagat Prakash Nadda JPNadda April 17 2025India faces a significant burden of haemophilia holding the secondlargest patient population globally estimated at around 136000 individualsYet ldquoonly 18 per cent are diagnosed compared to 90 per cent in developed nationsrdquo Dr Tulika Seth Professor Haematology AIIMS Delhi told IANSldquoHaemophilia is more than a bleeding disorder itrsquos a lifelong battle requiring constant care timely diagnosis and access to treatmentrdquo she addedSeth cited the lack of awareness as the major reason for delayed diagnosis which can lead to preventable joint damageEach bleeding episode requires attention and patients take a prolonged time for recovery and severe complications could occur if any bleeding is not attendedIn about 80 per cent of cases haemophilia manifests as bleeding most frequently involving the large joints like knees ankles elbows hip and wrist followed by deep bleeds affecting large body musclesHowever the most dangerous ones are bleeds affecting the headbrain neck chest cavity and abdominal and pelvic cavityThe expert noted that medical advancements are transforming the lives of patients with the conditionWhile traditional treatments involved clotting factor replacement during bleeds offering prophylaxis or preventive treatment new nonfactor monoclonal replacement antibodies like emicizumab are offering better protection with fewer infusions especially for patients with inhibitors Seth saidLast year scientists at the Centre for Stem Cell Research CSCR at Christian Medical College CMC Vellore developed the firstinhuman gene therapy using lentiviral vectors for severe haemophilia ACMCVellore scientists also conducted the countrys first human clinical trial of gene therapy for haemophilia A FVIII deficiencyThis story has been sourced from a third party syndicated feed agencies Midday accepts no responsibility or liability for its dependability trustworthiness reliability and data of the text Midday managementmiddaycom reserves the sole right to alter delete or remove without notice the content in its absolute discretion for any reason whatsoeveratOptionskeyd0ddb8ef8f1a62a8cdd22fac27fc5ea7formatiframeheight90width728params