Thalassemia is an inherited blood disorder that is passed from both parents to children, which results in low hemoglobin, due to which the body’s red blood cells, which carry oxygen to all the cells of the body, cannot function properly. Are. This leads to anaemia, which makes the patient feel tired or short of breath.
Severe anemia can damage the body’s organs. Additionally, frequent blood transfusions can lead to iron overload which can lead to organ damage if not adequately managed.
India has the largest number of children with thalassemia major in the world, around 1-1.5 lakh. About 10,000-15,000 children with thalassemia are born in the country every year, which is 10 percent of the world’s total incidence.
With early prenatal screening and detection, it is possible to diagnose congenital defects as early as possible during pregnancy.
“The only viable solution to the challenge of thalassemia facing society today is to avoid the birth of a thalassemia child. When a woman becomes pregnant, she should be screened for the disease. If she is found to be a carrier, the husband should also be tested. should be done,” said Dr (Prof) Pravas Mishra, Head, Hematology and BMT, Amrita Hospital, Faridabad.
“If both are found positive, a test is required on the unborn fetus. If the fetus is found to be affected, the parents can consider the option of abortion and avoid the birth of a thalassemic child,” he said. Said.
Since thalassemia is a genetically transmitted disease, the child will be either a thalassemic or a carrier. A carrier child does not suffer from the disease. A recent study conducted by the National Health Mission (NHM) states that around 42 million people in India are silent carriers of the condition.
While thalassemia is curable through stem-cell transplant, the cost involved is very high, around Rs 12-15 lakh. Moreover, finding a matching donor is also a burden for the families.
“Thalassemia major is a preventable disease, thus more efforts and awareness are required to help people understand the ways to prevent thalassemia. Having said that, there are a large number of children who are suffering from thalassemia. which cause a huge psychological and financial burden leading to poor quality of life and decreased life expectancy,” said Dr Gaurav Kharia, Consultant, Bone Marrow Transplant & Cellular Therapy, Indraprastha Apollo Hospitals, New Delhi.
“Like being preventable for children affected by thalassemia major, it is a highly curable disease by offering bone marrow transplant using an HLA identical or haploidentical donor,” he added.
However, Dr. Mishra said that a matching donor is found in the patient’s family only in 25-30% of the cases.
“The rest of the patients have to wait to find an unrelated donor. The ideal time to undergo a stem cell transplant is before the patient enters adolescence. In later years, iron overload in the body can lead to sub-optimal There is a risk of reactions,” he noted.
Thalassemia patients also require frequent blood transfusions, sometimes several times in a month. Getting good quality blood, and as often as needed, is a big challenge for them
Although many thalassemia societies exist today and try to get free blood transfusions by connecting patients to local blood banks and government medical colleges, however, this is inaccessible to most patients.