World Thalassemia Day 2020: Three things you need to know about the treatment of thalassemia
Thalassemia is an inherited blood disorder, which is transferred from parents to their off-springs.
World Thalassemia Day is observed on May 8th every year. Thalassemia is an inherited blood disorder, which is transferred from parents to their off-springs. This condition leads to a lack of an oxygen-carrying protein called haemoglobin. Haemoglobin carries red blood cells (RBCs) to different parts of the body. A lack of haemoglobin means less oxygen for the whole body. This leads to anaemia.
If both parents are thalassemia carriers then there is a 25% chance of the baby having thalassemia major (the most severe kind of thalassemia). In India, each year, 10,000 babies are born with thalassemia which can lead to a huge burden on the family.
Here are a few treatment options available:
1. Blood transfusion
The patients require blood transfusions at regular intervals from 6 months of age for their whole life, until they can be cured by a bone marrow transplant. With each unit of blood, they receive 126 mg of iron. The iron tends to get deposited into various parts of the body which has to be managed with medicines to decrease iron (or iron chelators). Some of the other features of thalassemia are short stature, failure to gain adequate weight and increased risk of infection (from frequent blood transfusions, liver enlargement, etc).
2. Bone marrow transplant
At present, a bone marrow transplant is the only curative procedure for thalassemia. The source for stem cells could either be a sibling or you can also try to find a match from various registries (Indian or international). A bone marrow transplant can cure 80% of thalassemia patients if done at an early age.
A new drug called luspatercept has now been approved by the FDA for adult patients suffering from thalassemia. It is an injection given under the skin. In clinical trials, luspatercept has shown a reduction in the requirement of blood transfusion in 70% of thalassemia patients.
For a resource-limited country like India, prevention will always remain the best cure for these patients. Over the past few years, the Government of India has taken many constructive steps like providing free blood transfusions and a regular supply of free iron chelators for thalassemia patients. This has led to an improvement in the quality of life and hopefully better survival of such patients.
If both the parents are carriers then testing the fetus between 10 to 12 weeks of pregnancy can help prevent the birth of a thalassemia major baby. This way we will be able to achieve the target of a thalassemia-free India.
This article is written by Dr Vikas Dua, Additional Director and HOD, Pediatric Hematology/Oncology and Bone Marrow Transplant, Fortis Memorial Research Institute, Gurugram.
For more information, read our article on 12 things people want to know about thalassemia.
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