Tuesday, August 25, 2009

Hello Guest!


Dear Visitor,

Now TSCS will soon be on Blogger too!

We wish to reach out for more people and in near future, we at TSCS will be on blogger too. Thank you for taking a keen interest to find us at this site.

This site is under construction and in test stage.

Thank you!

Team TSCS

Where we are Located?

In case you have any questions or queries you can personally visit the given address or contact via email...

Administrative Office & Transfusion Centre

Thalassemia & Sickle Cell Society
Door No. 22-8-496 to 501; Ist and 2nd floor,
Chatta Bazar 'X' Road, Near City Civil Courts
Hyderabad - 500002
Phone No : 040-64610610 / 24560011
Email: tscsap@gmail.com

What is Sickle Cell - Awareness...


Dear readers,
In this section we would like you to be aware of What is Sickle cell disease, How do you recognize it, Where to go and how TSCS can help you…


INTRODUCTION:


Sickle cell disease is an inherited disorder in which red blood cells (RBCs) are abnormally shaped. All the problems in sickle cell disease are due to its shape, which resembles a ‘C’, shaped farm tool called a sickle. Normal red blood cells are flexible and flow easily but in sickle cell disease due to its deformity, they are stiff and can get stuck in a tiny blood vessels cutting off the blood supply to nearby tissues.

This abnormality can result in painful episodes, serious infections, chronic anemia, and damage to body organs.

These complications can, however, vary from person to person depending on the type of sickle cell disease each has. Some people are relatively healthy and others are hospitalized frequently.

Today with early diagnosis and treatment, most kids born with this disorder grow up to live relatively healthy and productive lives.


HOW TO RECOGNIZE?

Recurrent episodes of fever associated with bone pains, anemia, jaundice and splenomegaly.





WHERE TO GO?



If above symptoms and signs are noticed/observed in an infant or child, consult your pediatrician. A simple blood test like CBP, P.S and Sickleing test will help in suspecting the problem.
Or
Contact Thalassemia & Sickle cell society of Hyderabad for further assistance.


HOW CAN WE HELP?


Thalassemia and sickle cell society of Hyderabad (TSCS) can guide you to approach our patron Doctors and If diagnosed with Sickle cell anemia, Parents and extended family of the child get genetic conselling and help is provided in management and prevention of these genetic disorders.

Know What is Thalassemia and how you can be aware!

Dear readers,

In this Section we would like to make you aware of

Thalassemia, type of Thalassemia, Signs and Symptoms , Diagnosis and how TSCS can help you...

What is Thalassemia?
Most of our physical characteristics are inherited through the genes we take from our parents; for example, the shape of our nose, the colour of our skin and eyes. We also inherit our haemoglobin (Hb) type from our parents, through the genes.

Haemoglobin (Hb) is the substance in the blood which gives it its red colour. It carries the oxygen we breathe to all our body parts; it is vital for maintaining life. Without red blood cells, the body cannot function.

Thalassemia is an inherited blood disorder in which the body is unable to make adequate hemoglobin. Hemoglobin is present in the red cells and is made from proteins. These proteins consist of alpha(α) and beta(β) chains. Normally 2 alpha and 2 beta chains are essential to form hemoglobin. Imbalances in these chains results in reduced red cell survival. The amount of beta and alpha chains a person makes is controlled by the haemoglobin gene they inherit from their parents.

Normally red cells survive for 120 days but in Thalassemia red cell survival is reduced. Survival of Thalassemia patients depends upon repeated blood transfusion and costly medicines.

In our country beta Thalassemia is very common and the term Thalassemia denotes beta Thalassemia.

HOW DO YOU GET BETA THALASSAEMIA?
A person can only get beta thalassaemia minor or beta thalassaemia major from their parents. These conditions CANNOT be transmitted like an infection; they can only be inherited through the genes.



Signs and Symptoms

Infants are well at birth but develop anemia between 3-18 months of age. This anemia is persistent, progressive and doesn’t respond to any form of therapy. They fail to thrive. The child becomes weak and lethargic with poor appetite; height, weight and the development is subnormal, milestones are delayed. Excessive ineffective erythropoesis also occurs in the liver and spleen resulting in the enlargement of these organs. In some children a mass (spleen) is felt on the left side of the tummy.

In the absence of adequate transfusions they develop typical features of Thalassemia. Marked skeletal deformities with frontal bossing, cheek bone & jaw protrudes, distortion of ribs and vertebrae and pathological fracture of long bones. Chronic hypoxia due to anemia leads to increase in heart rate, enlargement of the heart, stunted growth, heart failure and death.



If above symptoms and signs are noticed/observed in an infant or child, consult your pediatrician. A simple blood test like CBP, P.S will help in suspecting the problem.
Or
Contact Thalassemia & Sickle cell society of Hyderabad for further assistance.

Laboratory Diagnosis
Blood sample of patient subjected to special tests like HPLC/Hb Electrophoresis for estimation of HbA, HbF, HbA2, HbD, HbS and alpha Thalassemia.

Diagnosis of Thalassemia Minor/Trait/Carrier (BTT)
Complete blood count on cell counter may give some indications. MCV & MCH decreased, MCH<25%>3.5%.

Diagnosis of Beta Thalassemia Major
Patients have moderate to severe anaemia and haemoglobin concentration at presentation varies between 2-6gm/dl. MCH, MCV, MCHC are reduced. Peripheral blood shows broken red cells. HbF levels which are increased, may vary between 20-90%. HbA2 may be absent, reduced, normal or slightly elevated.


How can we help you?


Thalassemia and sickle cell society of Hyderabad (TSCS) can guide you to approach our patron Doctors and If diagnosed with Thalassemia, Parents and extended family of Thalassemic child get genetic councelling and help is provided in management and prevention of these genetic disorders.

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.