Society that ignored one blood disease that is now costing more than thousands of life either directly or indirectly.

What is that?

It’s Thalassemia, a genetic blood disorder. People with Thalassemia disease are not able to make enough hemoglobin, which causes severe anemia. Hemoglobin is found in red blood cells and carries oxygen to all parts of the body. When there is not enough hemoglobin in the red blood cells, oxygen cannot get to all parts of the body. Organs then become starved for oxygen and are unable to function properly.

This is one of the most challenging diseases being faced by mankind with virtually no permanent treatment for those who suffer from it. The only real treatment is periodical replenishment of blood through transfusion (1-2 unit blood in every 2-4 weeks).

Thousands of people mostly children are currently living in our state Andhra Pradesh with the disease. Recent development of iron chelation drugs like Asunra and Kelfer essential for the survival of thalassemia patients have made thalassemia a manageable disease.

The treatment is expensive and the parents have to spend at least Rs. 2,000/- to 10.000 per month for the treatment. The situation becomes worse for families from lower socioeconomic strata to arrange the required drugs at the right time which otherwise would be fatal

 
Facts about thalassemia

·         At least 4.5 per cent of AP’s population or one in every 25 persons is a thalassemia minor/ carrier and 17 percent is Sickle Cell Anemia carrier.

·         There are 500 to 600 thalassemia babies born every year in Andhra Pradesh.

·         An expenditure of approximately Rs 130,000 per thalassemic child annually.

·         These are only estimated numbers, the actual numbers (including the unreported cases, the deaths following birth are much higher.

·         It requires life-long blood transfusion, every three to four weeks and medicines, failing which 90 percent of children afflicted by it would die in childhood.

·     It is a genetic disease of blood, which patient’s inherit from their parents. They need blood transfusion of 1-2 units of blood every 2-4 weeks.

·         Excessive Iron is deposited in the body of the patients as a consequence of regular blood transfusion. They start suffering from different diseases like heart failure, liver cirrhosis, diabetes, retarded growth and so on due to the toxic effects of deposited iron.

 Request to the Government:

·         HbA2 Testing for every individual before marriage to know the carrier status and prevent marriages between carriers can help in controlling the disease. (Experts strongly feel, going for HbA2 test before marriage/conception followed by prenatal diagnosis (if required)

·         Sponsor a thalassemia child – Provide a ray of hope to poor patients who could not afford expensive treatments under Rajiv Arogyasri scheme.

·         To support the cause of thalassemia and provide the required medicines for children with thalassemia and control prevention of the disease in Andhra Pradesh.

·         Awareness campaign to donate blood using mass media communications

·         Bone Marrow transplantation is the ultimate cure of this disorder. Cost of transplantation is Rs. 10 lakhs. We appeal to Government to support this treatment under Rajiv Arogyasri scheme.

 WILL India (We Impact Lonely Lives)

A small group of friends and colleagues, with an intention to create a positive impact on the unnoticed, needy lives of our society.

Thalassemia & Sickle Cell Society (TSCS) is a registered NGO since 1998 (Regn.No. 5359) with WILL India is jointly fighting to help Thalassemia patients for adequate supply of blood , required medicines to lead normal life and to create awareness about this disorder for prevention.