Nagpur: Lawyer Vaishali Bagade had never hear the word ‘thalassaemia’ before she gave birth to a thalassaemia major baby girl ten year back. She admits that she couldn’t even pronounce the word thalassaemia even after it was told to her. But today, she’s not only aware of the cause, treatment and genetics of the disease but has also become a crusader against the disease.
“Our families had no history of the disease. We came to know about the disease after after my daughter Tanvi started showing certain symptoms of the disease. We faced many problems while treating her.
“But the disease was a big lesson. Before the marriages of my siblings were arranged, I ensured that they and their would-be spouses were tested for the trait. Now, preventing marriages between two carriers of the trait is my goal. I have won over thalassaemia,” Bagade said.
Twenty-one-year-old Kumar Bhure, who is a thalassaemia major, has also been working to create awareness about the disease. He said that his father didn’t understand anything about thalassaemia. But his uneducated mother was not only understood the disease but also worked hard to get me the right treatement.
“My father didn’t let me go to school. He left my mother because of my disease. But my mother never gave up. I had five siblings but all died. My parents too died few years back. Now, I live with my maternal aunt and campaign about prevention of the disease. My father’s behaviour strengthened my determination,” tells Bhure.
Bhure says that he never hid the reasons from anyone about his stunted growth, his weak health and physical condition. He was one of the persons who fought for additional 45 minutes for writing exam for students living with thalassaemia.
Parth Thakur from ‘The Wishing Factory’ or TWF, Mumbai, who now works for thalassemic children in city, told TOI that their NGO had fulfilled 322 wishes of thalassemic children so far. “In Nagpur too, we would pick up children who want their wishes fulfilled. But here we want people to adopt wishes which means that instead of the NGO spending money in meeting the wishes, people would sponsor wishes,” he said.
Swanand Kottewar, a member of the TWF added that the NGO has also started health care and awareness about thalassaemia along with an effort to provide education to the children.
Dr Vinky Rughwani, the president of Thalassemia Society of India who has been working for affected children for almost three decades, is demanding iron chelators, medicines used to prevent iron deposition in joints, free of cost from state government. He is also demanding free NAT tested packed red blood cells for thalassemic children.
The Disease
Thalassemia is a genetic blood disorder
When two gene carriers in recessive condition marry, there is 25% chance that they will give birth to a thalassemic child
Prevention of marriage of two carriers can stop the disease from spreading
Pre-natal testing of the baby in the womb is possible to allow abortion of the child is a thalassaemia major
Other children can be either carriers or thalassaemia minors or normal