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Thalassemia Program

Thalassemia is a disease of the blood in which there is increased destruction (hemolysis) of the red cells. There are various severities of the disease from thalassemia major-the severe form in which the patient needs regular blood transfusions in order to survive, to thalassemia minor an asymptomatic carrier state with patients of thalassemia intermedia in between. This is an inherited (can be passed on to the children from parents) blood disorder, in which the inheritance is autosomal recessive, that is both parents must carry the defective gene in order to pass on thalassemia major to the child. Thalassemic children have the same aspirations as any other child. But what hinders their innocent goals is the fact that they are surrounded by needles when other children are surrounded by books and toys.
Nature may have denied them what is rightfully their, but it is the lack of resources required for frequent blood transfusions and a dearth of quality blood that add to their misery. Even if doting parents manage to arrange blood for these children, their economic status may force them to discontinue treatment. Thus, many children from poor families die, and we do not even comprehend their loss.

What is Thalassemia?

Thalassemia is a type of anemia that is passed on genetically. It can be of two types, namely, Thalassemia Trait and Thalassemia Major.

Thalassemia Trait: persons usually have very mild anemia with no obvious symptoms. Around 6% of the population of India has thalassemia trait.
Thalassemia Major: symptoms are revealed early with paleness and an enlarged spleen or liver. In India , approximately ten thousand children are born with thalassemia major every year.

Complications of Thalassemias

With better blood transfusion practices and chelation therapy even patient without bone marrow transplant are surviving longer and many lead productive lives.
The complications which may occur in older thalassemia patients include

– Heart –including heart failure and arrhythmia (irregular heart beat) and Liver Diseases
– Thalassemia patients are prone to certain infections due to their iron overload status and if the spleen has been removed they are more at risk.
– Many thalassemics have bone problems, including osteoporosis (weakened bones). This is a condition in which bones are weak and brittle and can break easily.
– Endocrine problems like diabetes, thyroid, para thyroid problems etc can also occur.

At the moment, the only practical solution for survival of children with thalassemia major is multiple and frequent blood transfusion throughout life. Such a child needs one unit of blood every two to three months. This requirement goes up to two units of blood every three to four weeks.

How can YOU help?

Create awareness – The best way to lower the incidence of thalassemia is to increase awareness about the disease.
Perform a simple screening test to ascertain if you are a carrier – a blood test hamogram can be done on an automated Haematology Analyzer. A Confirmatory Test performing Haemoglobin Chromatography on Variant HPLC system confirms suspected cases.

Adopt a thalassemic child – Most thalassemics die unattended by the age of 3 to 4 years. Do not let an innocent child be deprived of the hope to live. All you need to do for saving a precious life is to contribute a small amount of money and adopt a thalassemic child.

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