Epilepsy patient in the past, ex-RBI employee Kavita Shanbhag now aids the disabled

Kavita Shanbhag (63) is one of those Mumbaikars who is known for their sheer grit. She has not only overcome epilespy, but has also set up a trust to help others. She has been actively involved in rehabilitating children and adults with disabilities. An ex-employee of the Reserve Bank of India (RBI), she has emerged as a role model for several others. S Balakrishnan spoke to her about her work and achievements. Excerpts from an interview:

When were you diagnosed with epilepsy?

I had my first seizure on the delivery table when having my first child at the age of 23. Seizure during childbirth is called Eclampsia.

I had my second attack when I was pregnant with my second child. Both the seizures were not identified as epilepsy. It was thought to be related to pregnancy on both occasions. When the seizures continued, I was tested, EEG was done and an abnormality was detected. Then it was diagnosed as epilepsy.

How did you overcome the challenge of epilepsy?

I was very fortunate that the seizures or epilepsy attacks happened only once in four years. After the first two episodes, I was aware that I had a different feeling before the seizure. This different feeling or a warning is called an ‘aura’. So I could go to a safe place or lie down or tell someone to take care of me. But socially things were different, people’s tone, attitude changed when I mentioned I have epilepsy. They associated it with mental illness. Back then, people had very little awareness about mental illnesses. I had great difficulty explaining to people that epilepsy is a neurological condition and it can be controlled with medicines.

This perception of people about epilepsy led me to a search for more information about this condition, which led me to the Indian Epilepsy Association, Mumbai Chapter’s support group Samman. So with the right medical intervention, regular support group meetings, support from family and friends, epilepsy never posed a problem for me.

Who inspired you to form ChildRaise Trust and what are its key areas of activity?

While attending epilepsy support group meetings, I came in contact with many children with associated conditions like autism, cerebral palsy, intellectual impairment, learning disability, etc. Parents were running helter skelter for tiny bits of information about special schools, sheltered workshops, therapists, etc. To help the parents with the right kind of resources and information, ChildRaise Trust was born in 2006.

Before that a website www.childraise.com was launched in 2001 with an online information service. In 2004, a resource guide ‘Journey to Empowerment’ was printed. Both these services were complemented with a toll-free helpline DISHA in 2010. Sanjivani epilepsy medicine project was launched in 2019 for underprivileged children with epilepsy. The three key areas of activity are Information, education and epilepsy medicine distribution.

How many kids have benefited from the trust?

For this I suggest that you check www.childraise.com/services.html

When did you join the RBI?

I joined the RBI in 1983 and quit in 2007 to be able to devote more time to our trust’s activities.

Future roadmap of the trust?

Train and include people with disabilities in the mainstream workforce. Create more awareness about various kinds of disabilities with the help of social media and other communication modalities like YouTube videos. Raise funds so that more people can be benefited under the Sanjivani project for epilepsy medicines.

Published on: Monday, May 15, 2023, 08:50 AM IST