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.
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.
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.
Serum Thalassemia Prevention Federation is one of the largest Thalassemia programme in the eastern India. Established in 2006 to deliver comprehensive care to the growing number of Thalassemics, the Federation has more than 5000 patients on active follow-up and over 100000 patients visits every year. The Federation is also at the forefront of creating awareness and research to develop new treatments for Thalassemia. Over a decade of its existence, Serum Thalassemia Prevention Federation has had a major impact on the care & awareness of Thalassemia both regionally & nationally.
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.
Serum Thalassemia Prevention Federation performs Thalassemia trait testing that involves having a single blood sample drawn and which can be done during a doctor's appointment, genetic counseling session, or at community health fairs organised from time to time.
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.
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 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.
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.
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.
"My daughter is a Thalassemic. My experience at STPF was superior and well above medical treatment. The physicians and staff treats my daughter with unbelievable care and compassion. Their attention to ensuring her well-being was exceptional."
- Radhika Chakraborty,
mother of Jyotika, 12yrs
"The days and nights became easier because of the wonderful care I received from the Doctors, Nurses, Aids and other staff member."
"I was suffering from Thalassemia Major since 3 months age. I was treated at the STPF very well with medical follow-up, regular blood transfusions every 3 weeks, vaccinations etc... I had my bone marrow transplantation and now I lead a normal life."
18 yrs, Thalassemic cure patient
Since it's inception in 2006, Serum Thalassemia Prevention Federation has organised numerous Thalassemia Awareness & Blood Donation Camps, Conferences, Seminars, Training & Workshops in the fields of Thalassemia & HIV. The Federation continuously organises social & cultural activities to create awareness amongst common masses so that these two deadly diseases can be prevented. Every year Serum Thalassemia Prevention Federation organises three massive awareness programmes, viz., May 8: World Thalassemia Day, August 15: Freedom from Thalassemia & December 1: World AIDS Day (organised on the 1st Sunday of December).