Known to be amongst the communities prone to fall victim to thalassaemia, the Khudabadi Amil Panchayat of Bombay (KAP), a Sindhi trust for the community, organised an awareness camp in the city on Sunday. “Not many are aware of this disease. So we decided to make them aware and also serve the community,” said Indu Shahani, president, KAP.
“When we heard about this, we thought we will attend it,” said Ritika Punwani, 14, a student of class IX.
Other communities prone to thalaessaemia include the Bhanushalis, Muslims, Marwaris, Punjabis, and Sikhs. In India, around 40 million people are considered to be carriers of thallasaemia (also known as thalaessamia minors). The Sindhi community has 16% minors.
While the minors are perfectly healthy, marriage between two minors can result in the birth of a thalaessamic major, whose chances of survival are very low. This blood disorder means no haemoglobin is produced in the body and a victim needs regular blood transfusion. “A five-year-old could require blood every 40 days and an 18-year-old, every week,” said Vinay Shetty of Think Foundation, which helped out in the camp.
Sapna Jeswani, president of We Care, another non-governmental organisation involved in the camp, said, “Difficulties do not end there. To balance the iron content, one has to keep taking tablets and in 90% of the cases, children do not cross the age of 20.”