- The programme aims to create awareness about Hemophilia among the people and educate them about its treatment and care
- There are around 45 diagnosed hemophiliacs in Chandigarh, of which 50% remain undiagnosed
newznew (Chandigarh) : The Chandigarh chapter of The Hemophilic Welfare Society organised a programme in the city to raise awareness about Hemophilia among people afflicted with the disease and their families. The event, organised before concerned citizens and senior officials of Chandigarh, began with a welcome note from Dr. Maghar Singh, Secy. Finance, The Hemophilic Welfare Society, Chandigarh Chapter, who was followed by other doctors. Dr. Neelam Marwah HOD transfusion Medicine PGIMER, Dr. Amita Trehan Pediatric Hematology unit head PGIMER, Dr. Pankaj Malhotra Hemato Onco PGIMER and Doctors from GMCH 32 and tricity.
Speaking on the occasion, Dr. Neelam Marwah said, “It is important to educate and provide proper information on Hemophilia Care to patients, their families and the medical fraternity. This programme helped us bring all key stakeholders on a single platform and share insights on the various aspects of the disease and its care. We appreciate the state government’s measures on making available the supply of high quality and safe factors for addressing patient requirements, but at the same time feel a lot more can be done. We are confident that with the support of all stakeholders, we will be able to fight the disease and allow the patients to live a healthy life.”
Hemophilia is a serious genetic disorder that affects one in 10,000 people in India, but there is a lack of public health intervention to prevent or control this genetic disorder. In Chandigarh alone, about 50% of people have been diagnosed with hemophilia. However, as per available data, many more remain undiagnosed, emphasizing the need for a national policy on the disease.
Besides creating awareness on Hemophilia, the programme aimed at highlighting diagnosis, available treatment options in Chandigarh and focused on purity of factors and recombinant therapy. The event also highlighted the improving compliance in the state physiotherapy or treatment options available, and other recommendations to improve Hemophilia diagnosis and treatment in Chandigarh.
People with Hemophilia are more susceptible to blood diseases like HIV/HBV/HCV. There are two types of hemophilia caused by a problem in one of the genes on the X chromosome (factor 8 or factor 9) that signal the body to produce the clotting factor proteins needed to form a blood clot. If the chromosome is missing, then a patient will need to be administered injections with genetically engineered recombinant factor concentrates for life. This helps reduce the possibility of infection.