Support group formed to help epilepsy patients

In India, an estimated 10 million are believed to be affected by epilepsy. However, a significant number of them do not receive primary treatment for various reasons, says Dr Dinesh Nayak, head of department, Neurology and Epileptology, Fortis Malar Hospital. 

The condition characterised by seizures goes beyond medicines and is a social disorder, he adds. “When a young girl of 16 years is diagnosed with the condition, the parents have several questions — will she get married? Will the medicines affect the foetus, etc. When it involves a child, schools refuse admission as they don’t want to take a risk. However, that is not the case with a child with diabetes,” he says.

To offer support to patients, which is most effective when it comes from another patient, Chennai epilepsy support group was launched on Monday, on International Epilepsy Day. 

Dr Nayak explains, “There are a lot of positive things that need to be highlighted. One can lead a normal life in most cases —at least 75 per cent of them who have the condition are functioning like everybody else in their daily life. For the remaining, they can be treated through surgery.”

He adds that the group will not be restricted to the hospital. “This is managed by patients and anyone can be a part of it, share experiences and concerns, discuss success stories, etc. I have a patient, who had undergone a surgery, coming second in a running race. Such stories can be encouraging for patients. It is a movement that can help them assert their rights in many ways. We have around 50 so far; this will increase gradually.”

There are several treatment gaps — primary, secondary and surgical — due to various reasons, adds Dr Nayak. “In Tamil Nadu, these gaps are lower, when compared to many other states, where it is as high as 80 per cent,” he says.