Life of a Thalassemic
In our first edition, we gave you a basic understanding about Thalassemia, how it occurs and what are the symptoms. Now, we are going to take you through the life of a Thalassemia patient.
The life of a Thalassemia patient is very painful, both physically and mentally. Let us look at the various treatments that a patient goes through and the costs involved.
Treatments and Costs
Blood Transfusions – Once a child has been diagnosed, regular blood transfusions are required. These transfusions may take place every 2-4 weeks depending on the level of blood in the body of the patient. These blood transfusions are very lengthy, painful and costly.
A small child will have needles pricked in his/her body for hours before the entire process is complete. The blood cannot be rushed into the body but it has to be supplied slowly and hence takes so much time. But you could just imagine how painful it must be for a small child to go through all this at such a small age.
Cost – Generally blood transfusions are free for Thalassemia patients in a few states. However, in most states they charge money for each unit of blood or for using the bed in these hospitals. Additionally, as this process takes up an entire day almost, there are other costs involved like food and travel. Approximately, ₹3 to ₹4k every month would be the average cost for this procedure.
You can see the distribution of blood cells in a normal child on the left and that of a Thalassemic child on the right.
Iron Chelations – Now our body is not designed to be infused with so much blood at such regular intervals. Therefore, due to so many blood transfusions, there is iron overload in the body. This has to be removed as otherwise it will have serious health implications.
To remove this excess iron, a procedure called Iron Chelation is carried out. Again, the child has to be taken to a hospital to get this iron removed. There are injections which are used to flush out this excess iron. But this is again a time consuming and painful process. Nowadays, oral medicines are available which help in reducing the iron levels in the body. However, the exorbitant costs of these drugs really put a lot of pressure on the patients’ family.
Cost – Iron chelation procedure is a costly one. Whether you go for the injections or the oral medicines, this process is very costly. The medicines would cost anywhere in between ₹1 to ₹4k every month.
Bone Marrow Transplant – The ultimate cure for Thalassemia is getting bone marrow transplant done. In this, the bone marrow stem cell samples are matched with the patient’s. Generally, healthy siblings are used to find out if there is a match with the patient. If the bone marrow stem cell sample of the patient does not match with any of his/her healthy siblings, then a bone marrow donor is required. Once the healthy stem cells are infused in the body of the patient, he/she can produce blood in the body and start leading a normal life. This is called Allogeneic bone marrow transplant where an external person donates his/her bone marrow stem cells.
This is a very long process with 5-6 months being used up for the entire procedure. Also, it is not a fool proof process and the transplant procedure may or may not result in desirable results.
Cost – This is the most costly procedure which costs ₹20 Lakhs or more. Also, this treatment is not available everywhere. The most common place where people go for this treatment in India is Vellore. Therefore, apart from the cost of the treatment, there are expenses relating to food and lodging for the family who accompany the child for this treatment.
There are some other costs which cannot be measured in monetary terms. The pain and agony that the child goes through cannot be measured. The pressures and frustrations that the family goes through cannot be measured. We have seen cases where husbands leave their wives when they find out that their child is a Thalassemic. There have also been cases where the entire family disowns the parents who are then left alone to fight this battle.
Families crumble and these innocent children lose their childhood because of this deadly disease. However, when you meet them, they still have a smile on their faces which shows hope and resilience.
How you can help?
There are two ways in which you can help:
- Donate Blood – You must have understood by now that blood is a necessity for these patients and that there is scarcity on a lot of occasions. In order to help these patients, you can donate blood. LHS organizes blood donation camps from time to time and you can join in to become a life saver for these patients.
- HPLC Test – Thalassemia is a preventable disease and you can prevent it by getting an HPLC test done. HPLC test is a simple blood sample test through which you can find out if you are a Thalassemia carrier or not. This is a one-time test and gives you the knowledge about your Thalassemia status and you can make an informed decision regarding marriage if you know this status. This test is available in some pathology centers and would cost you around ₹1,000.
- Pre-natal Test – For people who are married or for pregnant women, you can still find out the status by getting the pre-natal test done during the 10th to 12th week of pregnancy.
Our objective is to create maximum awareness about Thalassemia so that existing patients get more help and new cases of this disorder are reduced. We will keep working on this.