World Thalassemia Day 2024- Patient Awareness Programme

New Delhi :- World Thalassemia Day 2024,Division of Pediatric Hematology Oncology, Department of Pediatrics, VMMC & Safdarjung Hospital organised patient awareness programme. The program was attended by  MS Dr Vandana Talwar, Addl MS Dr PS Bhatia, Dr Jayanti Mani, Dr Ratan Gupta, HOD pediatrics. The guest of honour of the program was very renowned Thalassemia expert Dr J. S Arora who addressed the Thalassemia patients and parents regarding treatment and prevention of thalassemia. The importance of premarital and prenatal testing for thalassemia carrier state was emphasised. Interaction with patients and parents were done by Thalassemia treating teams to address their queries. Safdarjung already caters to many Thalassemia children who are getting regular transfusion and chelation therapy. There is 10 bedded dedicated thalassemia daycare centre. With interdepartmental coordination with Fetal medicine, Blood bank and Laboratory Hematology Thalassemia daycare at Safdurjung Hospital has reached a new height with advanced patient care. Very soon the children of Thalassemia major will be benefitted from bone marrow transplant in this hospital. Many patients along with their parents, nursing and medical students participated in the program with much enthusiasm. Quiz competition among post graduate students were conducted and poster competition was held for nursing students. The program was a huge success stated Dr Ratan HOD Dept of Paeds

Every year since 1994, International Thalassemia Day is celebrated on a particular theme related to the prevention, management, or treatment of the disease. The theme this year is “Empowering Lives, Embracing Progress: Equitable and Accessible Thalassemia Treatment for All.” The aim for 2024 is to ensure that all individuals with thalassemia receive well-rounded care with access to current and future treatments, irrespective of their location or economic circumstances. Incidence - India has the highest number of children with Thalassemia major in the world 1 lakh have beta thalassemia. Every year around 10,000-15,000 children are born with Thalassemia major, which contributes around 10% of global burden of Thalassemia major. Almost every 8 th patient of Thalassemia major lives in India. Delhi has around 2500 patients of Thalassemia major. We should target that each and every child suffering with Thalassemia should get adequate transfusion and optimal iron chelation therapy.

Caregivers should be emphasized regarding the importance of adequate transfusion and adequate iron chelation therapy which is very important to prevent long term side effects of iron overload. Iron overload has a widespread ill-effects on Liver, heart and endocrine function. We should also work to get the newer medications like – Luspatercept which will definitely improve the quality of life of patients and the family.

We should aim to facilitate and start Bone Marrow Transplant of these patients in our institution as it is the only cure for these patients. With expansion of thalassemia services in the Department of Pediatrics, I am sure that newer treatments will be made available more and more patients will be benefitted stated Dr Talwar  In future SJH will start BMT services for Thalassemia patients Thalassemia is added in the list of special disability recently and Government of India is taking several important steps to improve the treatment of these patients.