Indian Medical Scientific Research Foundation (IMSRF) was established on April 18th, 1991 and subsequently the Thalassæmia Eradication Program was started in 1993. 

Thalassæmia Major is a deadly genetic disorder / disease for which the treatment is painful, expensive and in the end can rarely extend life into adulthood. For Thalassæmia there is no cure: only prevention.

For a knowledge challenged society, the first step is to create awareness of the vicious repercussions of Thalassaemia as a genetic blood disorder.

To achieve this, regular lectures, exhibitions and seminars are held in rural areas, particularly targeting people of a marriageable age. The next step is pre-marital mass screening and counseling for Thalassaemia trait. 100% students of all 165 colleges affiliated to the Saurashtra University are covered in this programme by every year-end.

A pilot project for antenatal testing has been initiated at the Government Hospital in Rajkot. Continued Medical Education (CME) programmes are held periodically to update the knowledge database of individuals in the medical field.

The Government of India has recognized us as a Scientific Research Organization on blood related diseases. Spread over 45,000 sq. ft. of utility area, our state of the art workplace has a well-equipped laboratory, fully computerized database, mobile vans and a professional staff. Our administrative and technical teams abide by all the legalities and technicalities of running such an enormous project.

The eradication of Thalassæmia Major through prevention.

Thalassaemia is a genetic blood disorder in which the body produces little or no hemoglobin. Thalassaemia Major is passed on to the child when both parents are Thalassaemia Minor. Treating a child suffering from Thalassaemia Major is financially beyond the reach of most people. Moreover, the disease takes a heavy psychological burden on the family. Thus, the best course of action to protect ourselves from the economic, sociological and psychological constraints is to completely erase the disease from the face of the earth.

Thalassæmia produces children with typical small red cells - 'The Thalassæmia Trait'. To have this trait or to be a Thalassæmia minor is no disease, nor a serious matter. They are perfectly healthy.

However, marriage of two Thalassæmia Minor/Trait individuals may produce a 'Thalassæmia Major child' having the dreaded disease where the blood has defective and broken red cells.

The broken red cell of the Thalassæmia Major child cannot carry oxygen in the body - does not have healthy red cells, resulting in inadequate hemoglobin. The life of a blood cell is 120 days. The child needs regular blood transfusions and medical treatment for survival.

Frequent, transfusion of blood to a Thalassæmia Major Child results in excess iron deposits in the body, which can damage vital organs of the body. The iron deposit has to be removed by injections (DESFERAL) - a very agonizing and painful process where in the injection has to be taken with a pump inserted in stomach, dosing it drop by drop for over eight hours: minimum 5 times a week, 20 times a month, 240 times in a year and in 20 years life about 5000 times to be given and no survival is guaranteed even after spending Rs 2 million (over $42,000 US) per child on an average.

Even after this tormenting emotional and physical treatment, there is little chance that Thalassæmia Major child can survive beyond 20 years.

Thalassæmia is found in many countries around the world particularly within Asia, the Mediterranean, and the Middle East. This regional predominance is due to a genetic preference of people with Thalassæmia to survive Malaria if they are a carrier.

Rs. 30,000million ($600m) potential annual expenditure to cover the Indian population

Rs. 3791million ($76m) cost of eradication from India

As a result, Rs. 30,000million ($600m) get saved all over India, every year, year after year…

5,34,414 people screened

12,548 prospective parents screened

5,57,415 reached through Awareness Drive

The goal to eradicate Thalassæmia is tackled through a grass roots campaign. This campaign started with the mass testing of blood of students, whom were reaching marriageable age. From this pool, individuals whom tested positive for Thalassæmia received counseling about the dangers of Thalassæmia.

At the same time, much effort was given to the counseling of married couples with Thalassæmia Minor and for the prenatal diagnosis of Thalassæmia Minor pregnant women.

Thalassæmia.com
In-depth studies on Medical Management, Genetics, Psycho-social Aspects, Transfusion Therapy, Resources and References, FAQs, etc.
Website: Click here

Cooley's Anemia Foundation
A comprehensive FAQ page answering most questions and concerns on Thalassæmia.
Website: Click here

The WebMD
Discussed is Clinical Thalassæmia (major and minor), Causes, Incidence and Risk Factors, Symptoms, Signs And Tests, Treatment, Expectations (Prognosis), Complications, Calling Your Health Care Provider, Prevention, etc.
Website: Click here