HYDERABAD : There is a lot to understand when it is about a rare disease that sticks along for life. Thalassemia disease is a blood disorder and is seen in less than 1 percent of people in our country. To decode this disease and how it would be transferred to a child we got in touch with Dr Chandrakant Agarwal, President of Thalassemia and Sickle Cell Society Hyderabad who was present at the Continuous Medical Education (CME) event that took place recently.
Regarding the issue that was focused at the event about Thalassemia, Dr Agarwal mentions, “Basically we have been working hard for the prevention of Thalassemia, it is an easily preventable genetic blood disorder but due to no awareness in the society it has been spreading. We have been trying very hard to create awareness but it is hardly working.
The government has to come forward for this. What efforts we are putting in is very little. The idea was to connect with all the gynecologists in Telangana, pressurise them and educate them to get the HBA2 tests which is a test for Thalassemia which hardly costs and we are doing it for free of cost. We are here to support them for anything regarding Thalassemia prevention. If they just do the HBA2 test for all the pregnant woman coming to them for consultation in their first trimester of pregnancy it can be known whether they are Thalassemia carrier or not. If they are not they can continue the pregnancy and can never have Thalassemia major child. If she is a carrier there is nothing to worry but her husband needs to be tested and if he is not a carrier then there is nothing to worry. If both the husband and wife are carriers then there is a chance of Thalassemia major child taking birth. Our appeal to the government is that if we make HBA2 test mandatory this can be easily prevented. And Telangana will be declared a Thalassemia free state.”
About the precautions one has to be taking if he or she has been prone to the disease, he informs, “Thalassemia patient has to get the blood transfusion done for every 15 days and this would be for life time. There is no cure for that, because of the regular transfusion of blood there is iron overload in the body. It gets deposited in the heart, kidney, liver, brain, skin and other places of the body. It has to be removed through medicines which are costly. We have been doing that as well. There is no home remedy or Ayurveda medicine that works. The only permanent cure is bone marrow transplant. It is too costly and at the same time the patient’s HLA should match his sibling or parents. That is also very rare, we have done 133 bone marrow transplants which were free of cost.”
Speaking about the life span of Thalassemia affected patients, he says, “As of now we have patients aged 45-50. In Mumbai there is a patient who is around 62 years. Recently there was an international conference in Malaysia where we met a patient who is about 78 years old. If the patient is given transfusion and medicine properly and they look after their organs properly they can live a normal life.”