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Management of Thalassemia and Sickle Celll anemia patients

Campaign by Thalassemia and Sicklecell Society

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Story

The children suffering from Thalassemia need regular blood transfusion once every 2-3 weeks, lifelong. After 15 transfusions they also need iron chelating drugs daily to remove extra iron deposition in the organs due to blood transfusion. These children receive free blood, free transfusion, free medicines during transfusion, free consultation and periodic checkup by multi-speciality doctors once every 2 months. These drugs are expensive and parents have to shell out an amount between Rs. 5000 and Rs. 20,000 per month for life.

Thalassemia and sickle cell anemia disease are preventable inherited blood disorders. We need to create a lot of awareness in the community, so that people begin to opt for HBA2 and HbS testing before marriage to identify carriers. If they are carriers they should not be marry another person who is a carrier. Once a carrier gets married, there is a 25% chance of the birth of an affected child.

At present, our society has about 2424 registered children who suffer from this disorder, and they need regular blood transfusion. We need regular blood camps to provide them with an uninterrupted supply of safe blood. We need camps every alternate day, of around 100 - 200 units so that we can have 2000 units of blood every month. There is a scarcity of blood during summers and in November. In spite of our best efforts, we are yet to see much success with blood camps.

To campaign for safe blood transfusion.

To counsel & educate thalassemics, their families & doctors about the management of thalassaemia.

To create better facilities for transfusion, treatment & prevention.

To collect funds, equipments and medicines for needy children and their families.

To create awareness in public & promote detection/prevention programmes for the total control of thalassaemia with the help of the government and other Institutions.

Arranging blood donation camps for thalassemics, with the help of other voluntary organizations and the media.

To provide medicines and equipment required for Thalassemic patients at subsidized rates throughout the State.

To carry out screening programmes, besides giving genetic counseling at district centers across the state.

Promote education, employment and the integration of Thalassaemia patients into society, improving their quality of life and providing them with the chance to fulfill their dreams and objectives, including marriage and having children of their own.

1) Before establishing our society in 1998, there was almost no awareness about Thalassemia and sickle cell anemia in our region. After establishment of the society, there has been a remarkable increase in awareness about this disease

2) Management of Thalassemia children have improved which increase their lifespan.

Around 25 children have been cured by BMT (Bone Marrow Transplantation)

3) Few more societies have been formed in other districts like Adilabad, Karimnagar, Rajahmundry , Khammam, Vijayawada, etc.

4) Establishment of Aarogyasri scheme.

5) Procured a land at Shivrampally on nominal lease for constructing a four-storey building to have all the services under one roof

6) Research collaboration with Institute of Genetics and CDFD

7) Received award of excellence from NBTC and NACO for working towards 100% voluntary blood donation on 14th June 2016 and also from the TSACS in 2015

8) Since establishment of the blood bank, issued more than 86,190 units free blood to Thalassemia children

Organisers
Thalassemia and Sicklecell Society

Thalassemia and Sicklecell Society

Beneficiary Charity

Organiser

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