Bringing support to epileptic patients

Alpana Palan, a 40-year-old who suffered from epilepsy since she was six months old, found her first ‘real’ friend at ‘Samman’, an epileptic support group in the city. “I used to never go out alone and was quite nervous talking to anybody. Before meeting people here, I used to never tell anyone that I had epilepsy,” she said.

Epilepsy is a disorder of the central nervous system characterised by loss of consciousness and convulsions. A person with epilepsy suffers recurrent seizures. A seizure is defined as an abnormal, disorderly discharging of the neurons or brain cells, resulting in a temporary disturbance of motor, sensory, or mental functions.

As for any disease that looks ‘not-so-normal’ in public eyes, this one also has a lot of stigma attached to it. But with support groups like Samman, many patients have realised that there are a lot of people out there looking for support. And the best way to support is to support each other.

“This group helped me come out of my shell and become a confident person. I even worked here later on as a counsellor for other patients,” said Palan. She also found her husband, Manish, here. He was also part of the group.

Samman started on November 17 in 1991 — on a World Epilepsy Day. Several patients and doctors had teamed up for two months to prepare for the performances on that day. The bond that developed between them during the preparation made them realise the importance of interacting with people who suffer similar problems. Dr Praveena Shah, consultant neurologist, Wockhardt Hospital, is one of the founder members of the group. She believes that such a group is extremely essential, as the patients need psychological help along with medical help.

“Epilepsy is a chronic disorder and most of the patients are afraid to tell anyone about it,” she said. For over two-and-a-half years, the members of the support group used to meet at Dr Shah’s house once a month, where they used to have discussions and share their experiences. Now meetings are held fortnightly at a school in Nanachowk, where patients and their families interact with psychologists and counsellors.

“The help and support one can get from sharing each other’s experiences is far more important than the medical help,” said Manisha Alate, who has been associated with the group for over 12 years.

Samman epilepsy support group: 022-2385 8563/ 022-2385 0563
Websites: http://www.epilepsyindia.org, http://www.nlm.nih.gov/medlineplus/epilepsy.html