Thalassemia
Thalassemia is a genetic blood disorder. People with Thalassemia are unable to make enough hemoglobin, which causes severe anemia. Hemoglobin, which is found in red blood cells (RBC), carries oxygen to all parts of the body. When there is not enough hemoglobin in RBC, oxygen cannot get to all parts of the body and, thus, organs starved for oxygen and are unable to function properly.
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Treatment
Worldwide there are 350,000 births per year with serious hemoglobinopathies. Treatment for Thalassemia has dramatically improved. Today, patients can live full lives with careers and children of their own. All patients should undergo at least an annual comprehensive treatment counselling during which, recommendations are summarized after consultation with multiple specialists.
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Living with Thalassemia
Most families find out about their child's diagnosis shortly after birth. Even for families who maybe familiar with Thalassemia, might face difficult time adjusting to a new diagnosis with the expectation that the child to reach normal developmental milestones. The key to successful management of Thalassemia is the incorporation of psychological wellness & counseling along with medical care.
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Service
Thalassemia Awareness Camp
Serum Thalassemia Prevention Federation organises Thalassemia Awareness & Testing camps almost every months in different parts of India. It is estimated that 5 crore Indians are carriers of Thalassemia & almost 10,000 Thalassemia Major are born every year.
Blood Donation Camps
Maintaining a safe & adequate blood supply is very important since a severe form of Thalassemia require blood transfusions as often as every two weeks. STPF organizes blood donation camps regularly to help Thalassemics. Regular blood transfusions provide Thalassemia patients with the RBC they need to survive.
Blood Transfusion
Thalassemia major children cannot make normal hemoglobin level needed to produce healthy RBC and so they need regular blood transfusions. Without regular blood transfusions support, about 85% of children with β-Thalassemia major will die by the age of 5 years. The survival of Thalassemics depends on life-long repeated blood transfusion & costly medicines.
Chelation Therapy
Chelation therapy is the removal of excess iron from the body with special drugs. Thalassemics suffer from anemia & iron overload at the same time and cannot tolerate phlebotomy (blood donation). STPF provides support for patients & their families with Thalassemia.
DNA Testing
Because of the enormous diversity in clinical severity of Thalassemia patients, STPF performs complete DNA testing prior to commencement of treatment to determine prognosis, appropriate therapy & family counseling.
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News
There are about 240 million carriers of β-Thalassemia worldwide, i.e., 1.5% of world population, and in India alone, the number is approximately 30million. The burden of hemoglobinopathies in India is high with nearly 12,000 infants being born every year with a severe disorder.
A team of researchers led by scientists at Weill Cornell Medical College has designed what appears to be a powerful gene therapy strategy that can treat both beta-Thalassemia disease and sickle cell anemia. They have also developed a test to predict patient response before treatment.
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