Haemophilia workshop for patients with haemophilia – April 2019

Ludhiana: Haemophilia is a condition in which a specific factor 8 or 9 is missing which helps the blood to clot following an injury. It is estimated that 1 in every 5000 males born are affected by this disease. According to the Haemophilia Federation of India (HFI) data, there are 18000 haemophilia patients registered in the 85 Haemophilia Chapters across the country. World Haemophilia day is celebrated across globe on 17th April every year and the month of April is dedicated for haemophilia awareness. CMC Ludhiana along with the patients have celebrated this on 27th April 2019. More than 200 patients and their relatives attended the function and Director Dr William Bhatti encouraged the patients. Faculty Dr Narinder Singh from GMC Amritsar and Dr Gursharan Singh from GMC Patiala shared their experience in managing patients with hemophilia at their centers. Dr Chepsy Philip elaborated on the world haemophilia federation theme for the year 2019 which is “outreach and identification” and Dr M Joseph John talked about the project of identify the patients with inhibitors through which free inhibitor screening can be performed. Patients shared their experience of able to walk from a prior state of walking, having done both legs total knee replacement with the comprehensive hemophilia care they are now receiving. Haemophilia in India is a grossly under diagnosed disorder, mainly due to lack of awareness and diagnostic facilities in this country. PWH faces long term joint deformities and early death. Persons with haemophilia (PWH), if diagnosed and managed in time, can get a normal life contributing to the society like a normal person. The best treatment available is anti haemophilic factor (AHF). With the free factor supply through the Punjab Health and family welfare and National Health Mission, many patients in Punjab are benefitted with improved quality of life. Dr Y Uday from Research and Referral Hospital, Delhi explained about the use of real time data entry by patients through a mobile app. MrHimanshuMasih, the nurse coordinator concluded the meeting with a vote of thanks.