CHENNAI: The grit to accept their children’s physical conditions and look for ways to overcome it was the positive outlook of all parents present in the hall with their thalassemia-positive children. Children aged five to 18 years who are post-treatment or in treatment were the prime focus of the programme conducted by Apollo Cancer Centre Chennai recently at Taj Connemara. Apollo Cancer Centre Chennai commemorated the landmark of successfully treating the maximum number of thalassemia affected children under the Tamil Nadu Chief Minister’s Comprehensive Health Insurance Scheme (TNCMCHIS). M Govinda Rao, Dr Ravi Babu, Mohan Chandran, and Dr Preetha Reddy, occupied the stage to recognise the young thalassemia warriors and bring awareness about the disease.
Thalassemia is a genetic blood disorder that is found in every three out of 100 Indians. It affects hemoglobin levels resulting in the disruption of oxygen supply throughout the body. Alpha and Beta Thalassemia are the major forms of thalassemia. Alpha form transpires when there are defects in the genes, and the mutations in the genes are what cause Beta Thalassemia. It is a disease with no obvious symptoms is life-threatening if not treated in the early stage. The sole treatment for thalassemia is bone marrow transplantation.
Young dream chasers
Looking at their children suffer, parents undergo a tough time mentally. Having been unaware of this disease, most parents now feel apologetic for not having run through a simple blood test during pregnancy which could have helped to discover the defect in genes. In countries like Italy, Thailand, Maldives, and a few other Middle Eastern countries, premarital medical examination has become mandatory, which is not the case in India. Precautions like these help parents understand their genetics and be aware of diseases like these. “We didn’t realise our daughter had thalassemia till the age of 12. We had a difficult time seeing her under transplantation. Now, we are grateful to have come across that stage and now my daughter is completely cured,” said a parent.
Not constrained by their illness, children had their unique dreams to pursue in life. IAS, doctor, engineer, and pilot were some of the aspirations of the children. BMT is a complicated treatment. Children who underwent it or in the process, are fighting a tough battle. . One of the survivors, Samyuktha, successfully endured the treatment and is now on her mission of pursuing her IAS goal. “Every child has a dream, vision to follow, and we government and the advanced health sector in Tamil Nadu help them pursue it,” said Govinda Rao.
Raise awareness, save lives
“Private hospitals should collaborate with the government, to triumph over rare kinds of diseases,” said Dr Preetha. In most parts of the country, both rural and urban regions, thalassemia is seen as a foreign disease, not knowing of its existence in the neighbourhood. Educating the public about the dangers of the disease, through awareness programmes is imperative. Though blood transfusions help fight the disease, it’s not a permanent cure. Bone marrow transplantation is the only curative option. Under the TNCMCHIS scheme, around 165 young thalassemia affected patients are treated with bone marrow transplantation at Apollo Cancer Centre, Chennai.
The government is actively developing partnerships with private hospitals to provide treatment for patients. “’Pale white flowers turning into red blooming flowers’ is what we believe we bring into children’s lives,” states Dr Revathi Raj.