Thalassemia is one of the purely genetic diseases and actually Thalassemia Major is a genetic disorder in which formation of red blood cells is reduced and defective. This happens as a result of getting one bad gene from parents which means they have to be carriers of the disease. The carrier parents will not have any symptoms and that’s why it goes undetected. The affected children need to be supported with lifelong blood transfusion and managing the complications of multiple blood transfusions the most important being iron overload.
Thalassemia is preventable. Simple blood test complete Haemogram can raise the suspicion and HPLC test can confirm the presence of carrier state. Many people are now doing the test before marriage. It should be done by every couple before marriage. If both parents are carriers the risk of having a baby with Thalassemia major is 25% in every pregnancy. Although tests are available in early pregnancy (before the 12th week) to check if the baby is affected and if the test is positive, the decision of abortion may be taken.
Bone marrow transplantation is the only way to cure the disease. The option is limited to families who have other unaffected children and are complete match on HLA testing. Also the modern treatment and technic of blood transfusion are more effective than before.
But besides treatment, counseling is needed. In this circumstances Dr. Soumyo Bhattarcharya, eminent hematologist and head of the department of hemato-oncology, organizes Thalassemia Patients meet ‘Sanjiban’ in every year on behalf of Picnic Garden Lila Seva Society. In this year this is held at Rotary Sadan Kolkata. The idea is to take the patients and their relatives away from the depression, anxiety, fear, and expose them to a world of amusement, hope and enjoyment. In this gathering the patients and eminent artists, perform at same stage. The overall impression is the victory of the hope and optimism over depression and defeatism. About hundreds of patients have been present to this meet. In this Meet, the patients and their relatives share their experience of war against this disease. After this meet, the cultural program has been performed with full of joy.
As a conclusion DR. Soumya Bhattacharya has said that such type of patients meet inspires the patients and their families to fight against this lifelong disease. He has also said that quality health care for all patients are necessary so that they receive appropriate treatment and drugs.