BENGALURU: Indian Rett Syndrome Foundation (IRSF) is the only parent support group in the country for those suffering from the disease. However, there is no data on the number of patients suffering from the disease, which primarily targets girls.
IRSF brought together neurologists, geneticists, nutritionists, paediatricians and gynaecologists to answer the questions of concerned parents on topics ranging from menstruation to swallowing difficulties. The event was attended by 27 families from outside Karnataka and three of them were from Bengaluru.
Samir Sethi, IRSF president and father of a 24-year-old daughter suffering from Rett Syndrome, said that previously their support group was only focussed around the National Capital Region (NCR) and they were surprised to find more children when they took their meets across India. This was their 11th awareness meet.
“When we went to Mumbai, we picked up data on girls suffering from Rett. Now, we have reached out to families in Bengaluru. We believe that when we reach out to the government for help together, we can get things such as disability certificates and steer policy in place,” Samir said. Dr Rajni Khajuria was the first to start her research work on Rett Syndrome in India as part of her PhD thesis in 2005. She ended up becoming the bridge between parents and started IRSF.
