Tuesday, August 25, 2009

About Thalassemia & Sickle Cell Society - Introduction

Thalassemia and Sickle Cell Society of Hyderabad is registered nonprofit organization (Reg no: 5359). It was founded in 1998 by patients, parents, doctors, and well wishers. This is the only society in Andhra Pradesh committed for the care and control of Thalassemia and Sickle Cell Disease.

A society which was formed by handful members has now grown into an organization with 940 members. Among the 940 members, 728 members are Thalassemia major, 124 members are sickle cell, 75 members are Sickle Thal, 13 members are Thal-intermedia, 7 members are E-Thal and the rest are patients suffering from other Haemoglobinopathies like PRCA, Aplastic Anemia, etc.


The society is striving to ensure that every registered member/child gets proper medical care & support. If treated and managed well these patients can have a normal lifespan, they can marry and have normal children and lead a normal life. We at TSCS aspire to give this hope to all our members with love and care.

Aims & Objectives

  • Optimize treatment for all patients in order to improve the quality of life.
  • Create public awareness regarding prevalence of Thalassemia & genetically transmitted Haemoglobinopathies and prevent the same by screening programs.
  • Support self – help groups.
  • Support research for improved treatment and better patients care.
  • Set up a comprehensive Thalassemia center for patient management and tertiary center for prenatal diagnosis.

Mission

  • To promote the provision of appropriate treatment & to achieve a good quality life for every thalassemia patien.To encourage prevention policies with the aim of reducing the number of newly affected births.

Milestones

  1. Formation of Society – 1998.
  2. Free Transfusion Facility & Medical Consultation – 1998.
  3. Availability of Free Blood – 2001 (with support from Red Cross Blood Bank, Hyderabad).
  4. Prenatal Diagnosis – 2002 (support from Fernandez Hospital,CDFD, CCMB, Institute of genetics - Hyderabad)
  5. Regular Medical Check up & Laboratory Investigations for members – 2003 .

Facilities available for members

  • Free blood transfusion center.
  • Pre-transfusion Hb.
  • Free consultation and genetic counseling.
  • Regular Growth monitoring.
  • Hepatitis-B vaccination at subsidized rates.
  • Serum ferritin level at subsidized rate.
  • A2 level screening for Thalassemia traits with Bio-Rad Column/HPLC.
  • Chelation drugs at subsidized prices.
  • Psychosocial support.

4 comments:

  1. When I came to know about society, I thanked the GOD, as my younger brother is sickle cell anemic. He is 24 years old now. He has been suffering from this disorder since his birth. We came to know about this when he was 12 yr old. Several crises, several blood transfusion he has undergone. but It does not seems any hope of his cure.Kindly help us, how to go ahead with this disorder. As we can not afford the cost of bone marrow transplantation.
    vinnuks@rediffmail.com

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  2. when my sister died.my relative named devi said that her son who studying 6th class is suffering with thalassemia.due to changing the blood daily his iron levels are heavily increasing.even she dont know when he will die.please help them is there any treatment for complete cure?

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    Replies
    1. miss rekha for iron chelaton plz contact on lateef4004@gmail.com

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  3. Did anybody from Hyderabad tried above medicine ? Kindly let us know the feedback.

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