New Delhi, May 8 (IANS): For four-year-old Zoya, life is an ongoing battle. A patient of thalassemia major, Zoya fights death every single day. Her parents, despite being advised to undergo medical tests to diagnose her condition when she was in her mother's womb, chose to ignore this.
Now, this ignorance can cost them their only daughter's life, after they lost their four-year-old son two years ago due to the same blood disorder.
Zoya's parents, who run a small grocery shop in south Delhi, have been asked to deposit the amount required for the bone marrow transplant - the only way to cure the disease - else pray to god for her health.
According to experts, in India, more than 10,000 children are born with thalassemia every year due to the sheer lack of awareness among couples, who are getting married.
This ignorance is also leading to a rise in the number of deaths among thallasemic patients, most of which is in the rural areas because of the low awareness, experts said.
"The disorder causes iron overload, bone deformities and also cardiovascular illness leading to death", V.P. Choudhary, director, hematology at the Gurgaon-based Paras Hospital told IANS.
"Awareness plays a major role in case of thalassemia. Owing to ignorance, patients often do not opt for such diagnosis and end up transferring faulty genes to their
children," Choudhary said.
Thalassemia, a blood disorder, is caused by the weakening and destruction of blood cells. It is also caused by variant or missing genes, which severely affect the making of haemoglobin protein, an essential ingredient, which helps red blood cells carry oxygen.
Choudhary added that if either parent is thalassemic, then there are 25 percent chances that their progeny will have the disorder as well.
"Such a child with thalassemia is called thalassemia major," he explained and added that such children require blood transfusion at regular intervals.
"Hence, in such cases, it is better to prevent the birth of such children. It is therefore essential that their parents opt for screening, even termination of the pregnancy if required," Choudhary told IANS.
Experts advise parents to get a Complete Blood Count test (CBC), NESTRO test and the Haemolobin Electrophoresis test done in case the doctor finds any
abnormalities during their blood analysis.
"Though a bone marrow/stem cell transplant cures the disease permanently, there is a high deficiency of people in India who are willing to donate. They are skeptical that the donation would effect their health", Chaudhary shared.
Agreed Ravindra Gupta of the internal medicine department at Gurgaon's Columbia Asia Hospital, adding that couples should opt for genetic counseling before tying the knot.
"A number of parents opt for a stem cell transplant in the hope of giving their child a healthy future. However, they should come forward and donate a part of their stem cells to the bone marrow registry, where the cell's human leukocyte antigen (HLA) typing can be done and stored in the database. This will help the community at large", Gupta told IANS.
HLA is a type of molecule found on the surface of most cells in the body. It plays an important part in the body's immune response to foreign substances.
HLA tests are done before a donor stem cell or organ transplant, to find out if tissues match between the donor and the person receiving the transplant.
Gupta agreed that though there is an increase in the number of deaths among thallasemic patients, such deaths are prominent in the rural areas because of low awareness levels.
"Many times during blood transfusion infected blood is given to patients, which not just makes them prone to infections, but in some cases can also be fatal," Gupta told IANS.
According to a WHO report, more than 90 percent patients with thalassemia in Western countries lead a long and normal life. However, half of such patients in India die before reaching adulthood.
Experts accept that it is the poor level of transfusions, medical therapies and HIV and hepatitis-infected blood, which are responsible for thalassemia-related mortality in India.
In developed nations, Gupta added, the patient awareness is high and people voluntarily opt for such screening tests.
He shared that patients in such countries had an added advantage as they have access to state of the art treatment procedures and facilities the cost of which is either borne by the government authorities or the insurance companies.
Calling for government intervention, Gupta said that it is high time the Indian authorities initiate measures, much like those available in the developed countries, for thalassemia patients.
"State of the art treatment facilities, along with free availability of drugs and medicines should be provided for such patients. Also, monitoring and initiation of
screening programs and facilities for prenatal diagnosis and control of thalassemia is urgently needed," Gupta said.