Chandigarh, April 24, 2022: With an aim to raise awareness about the rare bleeding disorder 'Hemophilia' among people and to bring problems faced by People With Hemophilia(PWH) to the attention of health policymakers – The Hemophilic Welfare Society(THWS), Chandigarh observed World Hemophilia Day (WHD) at Hotel Park View, Sector 24, here, on Sunday.
The event saw participation of delegates from various departments of PGIMER and Government Medical College and Hospital, Sector 32. Representation was witnessed from departments like Paediatrics, Clinical Hematology, Pathology, Physiotherapy, Orthopaedics, Blood and Transfusion Medicine, etc.
Sensitizing the people about the rare bleeding disorder 'Hemophilia', Dr. Deepak Bansal, Department of Haematology-Oncology Advanced Paediatric Centre , PGIMER Chandigarh said, “Hemophilia is a genetic bleeding disorder which is caused by the absence of certain proteins called clotting factors VIII & IX in the blood. When a person with Hemophilia suffers an injury, they bleed profusely for a longer period than others due to lack of clotting factors in the blood.”
THWS agreed that PWH need special attention in OPDs' at PGIMER. An idea to move a proposal to ensure an operational Center of Excellence (COE) & dedicated daycare center for Hemophilia at PGIMER and also GMCH - 32 was also mooted at the event.
Dr. Geetanjali Jindal, Department of Paediatric Haematology, Government Medical College and Hospital, Sector 32 Chandigarh said, “Managing hemophilia in children is very challenging for parents. Therefore, in such cases, the parents need a great deal of support and counselling. Injuries should be prevented in children with Hemophilia. To prevent injury, parents must ensure a lot of things, for example sharp edged toys should be kept away from their kids. A hemophilic child should not receive an injection directly into a muscle during any medication. Furthermore, such kids should avoid contact sports and instead should choose swimming, table tennis etc.”
“Today’s event holds great significance as it would raise awareness and educate people about the rare bleeding disorder 'Hemophilia'. Through this event we want to draw the attention of the UT administration, state and central governments and appeal to them to provide adequate medicine provision for PWH. Treatment of Hemophilia is very expensive so the government should also help needy PWH financially. With the collective effort we can significantly work towards better diagnosis and accessible care for all hemophilia patients,” added Dr. Maghar Singh, Secy. Finance, Hemophilic Welfare Society, Chandigarh.
The event was further marked by an open discussion on case studies and other relevant topics related to Hemophilia . Medical sessions were followed by a panel discussion on - FAQ's in Hemophilia wherein treaters and guest speakers answered the queries of more than 20 PWH present during the program.
The program concluded on a good note as treaters & PWH eventually developed a consensus that there is a need to work together to make 'factor concentrates' and other related treatments available in the region & PGIMER, Chandigarh.
Dr. Harpreet Singh, Office Secretary; Rohit Sharma, Executive Committee Member; Rajesh Sood, Executive Committee Member; Vishnu Goel, Guest Of Honour, Heading Hemophilic Welfare Society ,Yamuna Nagar, Haryana were also present at the occasion.
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