The event focussed around creating awareness on thalassaemia and aimed at registering more number of potential stem cell donors
Aster CMI Hospital in association with DKMS BMST Foundation India (DKMS-BMST) conducted an event to mark the occasion of World Thalassaemia Day which was observed recently. More than 100 delegates were present along with the Deputy Director and State Nodal officer, State Blood Cell and Directorate of Health and Family Welfare Services. The event focussed around creating awareness on the condition of thalassaemia patients and aimed at registering more number of potential stem cell donors to give maximum number of thalassaemia patients a second chance at life.
Every six minutes, someone in India is diagnosed with blood cancer, thalassaemia and aplastic anaemia. By registering with DKMS-BMST, donors can donate their stem cells to someone in need of a stem cell transplant. The event was held to not only to get help for thalassaemia patients but also to improve their survival chances and give hope to those patients who are searching for a tissue-matching donor for a lifesaving treatment.
Commenting on thalassaemia, Dr Stalin Ramprakash, Consultant, Paediatric Haematology, Oncology and BMT, Aster CMI Hospital, said: “Beta thalassaemia is the most commonly inherited genetic disorder in India and India is the world capital of thalassaemia. Now most of the infectious diseases are coming under control, non-infectious conditions like thalassaemia are contributing significantly to morbidity and mortality. Thalassaemia is an easily preventable disease as has been well demonstrated by countries like Italy but there needs to be a co-ordinated effort in increasing awareness and political will. The conservative management is improving but still a long way to go and bone marrow transplant offers the hope of permanent cure for a proportion of these children. With World Thalassaemia Day being observed recently, let us make a resolve to work towards prevention of birth of thalassaemic children, optimise the care of existing patients and consider bone marrow transplant for all eligible children – finally aiming towards a thalassaemia free India in the future.”
Speaking on the need to increase the support for thalassaemic patients Gagandeep Singh Chandok, President, Thalassaemia and Sickle Cell Society of Bangalore said: “We are thankful to Dr Prabhakar TS, Director, Directorate of Health and Family Welfare Services, Bengaluru and Dr Swatantrakumar Banakar, Deputy Director and State Nodal officer Blood Cell, Karnataka for gracing the occasion and making it a grand success. This event is to celebrate the World Thalassaemia Day which is celebrated worldwide on May 8. It is an event to unite and bring ‘Us’, the thalassaemics, together to thank the Health and Family Welfare Services for the free iron chelation medicines in Karnataka. We want to thank DKMS BMST Foundation for the Free HLA camp. We are thankful to Aster CMI Hospital for their support in conducting this event and for the free health check-up. We hope to get more support from everyone in improving the living conditions and ensuring the best treatment for all thalassaemics in the state, as well as well as make Karnataka a zero thalassaemia birth state. We are eagerly waiting for the thalassaemia registry and disability certification to start in the state as soon as possible. We, the Thalassaemia and Sickle Cell Society of Bangalore, will provide all the support required by the government for whenever they require it, and will continue to fight for the rights and the welfare of all thalassaemics. ”
Also speaking at the event, Dr Banakar said: “We will ensure thalassaemics will continue to get free blood transfusions and free iron chelation medicines in the state. We will work with the Thalassaemia and Sickle Cell Society of Bangalore to ensure that all thalassaemics get the best medical treatment as well as work on thalassaemia awareness and prevention programmes. We will work on launching the thalassaemia registry soon in co-ordination with the Thalassaemia and Sickle Cell Society of Bangalore. We will be putting up posters in all blood banks and hospitals in Karnataka to make all thalassaemics aware of the availability of free iron chelation medicines in all district hospitals.”
“We will work on programmes and projects to provide the best medical treatment in the state of Karnataka. Free iron chelation medicines have been made available in all district hospitals. We are working on a thalassaemia prevention programmes to bring about awareness of thalassaemia and make Karnataka a zero thalassaemia birth state. It is important for patient run organisations like the Thalassaemia and Sickle Cell Society of Bangalore, to work side by side with us in all our programmes and highlight the problems that the thalassaemics are facing so that we can solve them. We are working on the disability certification programme for the thalassaemics and will get the same issued at the earliest.” said Dr Prabhakar while addressing the audience on the governments work towards making Karnataka a zero thalassaemia birth state.
Thanking the Thalassaemia and Sickle Cell Society of Bangalore and Health and Family Welfare Society for their commitment towards ensuring best medical treatment to thalassaemia patients, Lakshmi Punjabi, a thalassaemic patient said: “The event was excellent. I thank the Thalassaemia and Sickle Cell Society of Bangalore, lead by Gagandeep. We got updates from the Health and Family Welfare that they are working to provide us the best medical treatment. I am happy that they are providing free iron chelation medicines and we pray that they continue to provide them. We are awaiting the disability certificate to be issued. I hope that the government will continue to support and work on thalassaemia awareness programmes. We are thankful for the support from Aster CMI Hospital for organising a free health check-up. Many parents were happy about the free HLA match test that was performed during the event by the DKMS BMST Foundation. I hope Thalassaemia and Sickle Cell Society of Bangalore does more events and we will support them in every programme.”