By: Gautami Srivastava
Shimla. A little fragile frame asks slowly, “Doctor Uncle, can I ever live a normal life? My parents are always worried about me.” One can not believe that Pranjal, who seems to be much less than his age, is eight years old. Aditi looks like a student of 4th or 5th class is a 16 years old girl. She asks, “My growth has completely stopped. What should I do?” These were some of the questions raised by children in Thalassemia Awareness Workshop organized by Umang Foundation; a public welfare trust, in Shimla. Dr. Joseph John, Head, Department of Clinical Hematology and Bone Marrow Transplant at Christian Medical College, Ludhiana was the main recourse person in the programme. Dr. Navin Kakkar of CMC also addressed the children with Thalassemia and their parents. The workshop was supported by Pfizer Limited. Thalassemic children from Shimla and surrounding areas participated in the workshop.
Dr. Joseph John, a renowned expert, said that pre- marriage Thalassemia detection test can check the spread of the disease. He said, about one hundred thousand children with Thalassemia major are born in the world every year out of which 10 to 12 thousand are born in India. This is a genetic blood disorder of very serious nature and patients with Thalassemia major have to survive on regular blood transfusions whole life. The medicines of the disease are also very expensive. He said that Umang Foundation was doing a commendable job in making people aware and supporting the children with Thalassemia.
In his presentation, Dr. Joseph emphasized on the preventive measures and gave an example of Cyprus where Thalassemia had been eradicated through law. He said, “In that country, it is mandatory to show Thalassemia negative certificate in the Church or court to get marriage registered. But in India, it could be done through persuasion as only law can not yield result in such a huge population.” This disease is more prevalent in the northern region including Punjab, Rajasthan, J & K, Haryana, Delhi and West Bengal and Assam, he informed.
According to him, lone substitute of regular blood transfusion for Thalassemic patients is bone marrow transplant. The ideal age for this transplant is between 2 to 8 years and beyond this age, the risk factor goes up. But the cost of such transplant is very high. A patient has to spent any where between Rs. 10 Lac and 15 Lac or more in some complicated cases in India and between Rs.2 to 4 cror in the United States. He said, “One time expenditure on transplant is cheaper than to maintain patient on transfusion and medicine for the whole life. To support the Thalassemic patients who come to CMC Ludhiana for transplant, the Tata Trust has initiated a subsidy of Rs. 3 Lac for the next one year and the patients can get a support two Lac from the Prime Minister Relief Fund. In such cases, success rate is 60 to 80 percent in our country.”
Dr. Navin Kakkar said that if the Thalassemia detection test is not conducted before marriage, the pregnant mother must go for Thalassemia test of fetus in the first three months of the pregnancy. If the test is positive for Thalassemia major, the medical termination of pregnancy could be an option. Both the experts addressed the queries of the patients and their parents
In the beginning, Ajai Srivastava, Chairman of Umang Foundation, while welcoming the guests said that his public welfare trust is the only representative body of children with Thalassemia. He said that during the year 2009, Umang Foundation donated as many as 700 units of blood to the Indira Gandhi Medical College and Deendayal Upadhyaya Hospital in Shimla through camps and emergency donors. This year, till 22nd October, it has been able to donate 675 units of blood to Shimla based hospitals and would achieve the target of donating 1000 units of blood by the year end. According to him, now the Foundation has started supporting the economically weak children with Thalassemia by providing them with medicines. Apart from this, the Foundation is fighting with the government agencies for blood safety and scientific blood banking system in the state.
Yashwant Rai, General Secretary of Umang Foundation informed that next year a state level workshop would be organized in Shimla. He said that the Foundation is conducting small workshops to sensitize the masses about Thalassemia and the problems of the Thalassemic children. In the last, Dr. Joseph John presented gifts to the children with Thalassemia. Kulbir Bhatia, representative of Pfizer Limited, said that his organization would like to support the cause in future also.