Thalassemia is a preventable genetic blood disorder, requiring lifelong blood transfusions and management. Thalassemia carrier status can be detected by doing a simple blood test (HbA2 levels > 3.5gm %). A carrier person should avoid marriage with another carrier as there is a 25% risk of bearing a THALASSEMIA MAJOR Child at every conception. Hence they should be tested for HbA2 levels before marriage and counseled accordingly to prevent the birth of an affected child. Management of thalassemia child is an emotional and economic burden on the family as well as the government.
We, Thalassemia & Sickle Cell Society (TSCS) is a registered NGO (Reg. No.5359/98) and is THE BIGGEST SOCIETY IN THE WORLD serving Thalassemia & Sickle cell children since 1998.
Our prime objective is to enhance patients’ quality of life, suffering from Thalassemia Major and Sickle Cell Anemia, and strive to stop further affected births by creating extensive awareness about the disorder. At present more than 3000 patients are being served under one roof, a unique and unmatched feat in the whole world. Well-established Blood Transfusion Centre, Modern Blood Bank, Advanced Pathology & Diagnostic Lab and Research Lab, all under one roof, under the aegis of the society is serving the poorest of the poor at almost zero cost, with high standards of quality and efficiency. National and Internationally renowned Specialists in Blood Disorders have been visiting and guiding us from time to time.
THALASSEMIA AND SICKLE CELL SOCIETY – KHAMMAM
With a vision to extend its services to all the patients, Thalassemia and Sickle Cell Society has moved a step forward to spread its centres across Telangana and Andhra Pradesh. As an initial step, it has opened a new centre with 10 beds at Khammam, to support the patients coming from the surrounding districts. Our main aim is to extend our support to tribal agencies of Kothagudem and Bhadrachalam where we can find more Thalassemia and Sickle Cell Anemia carriers.
TSCS has collaborated with Vijayasri Blood Bank, Khammam to provide safe blood to thalassemia patients free of cost. Our Khammam centre got empanelment under Telangana Aarogyasri Health scheme to avail free services for our patients. Around 200 patients are availing of free services at our Khammam Centre.
As a step towards Prevention TSCS started free extended family screening of our patients on regular basis. Hence we organized an Extended Family Members Screening (HbA2 test) of our patient’s on 26th February 2022 at our Khammam Office. We have collected 78 of our patient’s extended family member’s samples.
- Free consultation with specialized Doctors on every visit for blood transfusion
- Regular monitoring and counseling to patients and parents/guardians
- Free QUALITY BLOOD and Blood Transfusion for all Thalassemia and Sickle Cell patients. 1,31,409 units of blood given to Thalassemia children
- 2411 Voluntary Blood Donation camps were organized till Dec 2021
- Free medicine for all the patients who are not eligible for Aarogyasri
- Free periodic Medical check-up/consultation for all patients with Haematologist, Cardiologist, Endocrinologist, Pathologist, Ophthalmologist, Dentist and Radiologist
- Free Investigations like T2 MRI, 2D-Echo, X-Ray, Ultrasound Sonography, Scanning and Eye Testing etc. for our patients periodically
- Free HPLC (HbA2) testing for all to identify the carrier status
- Our prompt and proactive actions ensure blood safety and maintain a better quality of blood components.
- Free HLA typing for patients, siblings and mothers.
- Free Bone Marrow Transplantation (BMT) for eligible (HLA matched) patients at Bangalore. Also helps the parents for HLA MUD(Matched Unrelated Donor) search with help of DATRI and DKMS
- Initiated a program to prevent the birth of Thalassemia children through Screening of pregnant women for carrier status at government maternity hospitals.
- DNA Test of patients for beta-thalassemia, delta thalassemia, E-thalassemia, alpha thalassemia, sickle cell anemia.
- Prenatal counseling to Thalassemia carrier parents and guidance for CVS sampling and amniocentesis in collaboration with NIMS Hospital. So far we have done 210 prenatal diagnoses, 54 foetuses affected out of which 43 were aborted and could save thalassemia affected birth.
- Provision of Breakfast and Lunch to all patients and attendants coming for transfusion
- Computerized Database of all the registered thalassemia and sickle cell patients for analysis and for research purposes.