India: SUDEP and cultural perspectives
[Part 4: Action; Shah P]
I have been a practicing neurologist for the past 40 years and have seen thousands of patients. There are certain patients whom one never forgets.
Farhat had generalized seizures from childhood. Initially, a paediatrician looked after her and I took over from the age of 15 years until she died at 30 years. She was not well controlled, with a combination of Phenobarbitone, Phenytoin and Carbamazepine. Fear of seizures and overprotection did not allow her to go to school. She learnt basic reading and writing through home tuition. She was a shy, quiet and very loving person. Her parents tried their best to keep her happy. We witnessed a miracle on the 1st National Epilepsy Day event, on 17th November 1991. It was a cultural event. The girl, who had never stepped out of the house, came on stage to perform a prayer dance in front of an audience of 700 people. From that time on she was more communicative and expressed her feelings and thoughts freely. She started enjoying life and became more social. One day, I received a frantic phone call from her father “Farhat is no more”. I was shocked. That day, post lunch, she had slept as usual. As she did not get up at her normal time, her mother tried to wake her up. She found her dead. It was a big loss to the family and to our support group SAMMAN.
Nimesh had posttraumatic seizures. A few months after a bike accident, at the age of 15 years, the seizures began and they were not well controlled. His condition led to aggressive and obsessive behaviour. However, he was a very loving, caring and kind-hearted person. One day, in the afternoon he felt unwell and tried to call me, but I was not at home. There were no cell phones at that time. He was found choked, cyanosed and, by the time he was rushed to the hospital, he had died. His family, thereafter, has been of great moral and financial support of our epilepsy support work at ECELL.
Every time I lose a patient due to SUDEP, I feel very depressed and think epilepsy is not simple. It takes away a person so fast. And, we as doctors cannot satisfy relatives with a proper explanation and cannot answer all their questions WHY, HOW? etc.
Epilepsy support in Mumbai
In 1991, at an NSI meeting Dr Eddie Bharucha decided that the Epilepsy Association should adopt a day to be celebrated as National Epilepsy Day (NED) and November 17th was chosen as the day. I got together some of my patients to put on a dance show, which was choreographed by dance teacher and person with epilepsy, Archana Palekar. We also launched my book ‘Epilepsy Facts’ in Hindi and English. Another important event took place: psychologist Neeta Sodhi, after speaking about her experiences with epilepsy suggested forming a ‘Self Help/Support Group’. She received 71 calls the next day. The epilepsy support group’s first meeting was held on Neeta Sodhi’s terrace and subsequent meetings were held at my residence on Saturdays. Support group meetings were later shifted to Conwest Jain Hospital & Research Center. Then at ECELL, an exclusive place for our activities and office, after 1997. The group designed a logo for themselves with the words 'God Helps Those who Help Themselves' and the name SAMMAN (self respect).
We have had various awareness activities, like a painting competition, essay competition, poster making competition and workshops for patients, paramedics and families of epilepsy patients.
We have had documentaries made for school awareness programmes and hospital patients. Counselling is regularly done by counsellors and psychologists.
We give AEDs at subsidised rates to our patients. Fortunately we regularly receive donations from our well-wishers for this Drug Adoption Program.
We also have been conducting Rural Epilepsy Clinics for the last 7 years. We visit every 12 weeks, have proper follow-ups and supply AEDs for a very nominal contribution.
The important point is that most of our activities are done lovingly by our patients and their family members and we only have 2 salaried people on a regular basis; and that is a token salary. Thus most of our donations are being used directly for patient welfare.
We, at ECELL, have support group meetings every 2nd and 4th Saturdays, to share personal experiences, have informative interactive sessions on medical and nonmedical subjects, and of course discuss various issues related to epilepsy. We have talked about SUDEP, especially when a member goes through it. However, there has never been very detailed discussion; possibly because we do not want to scare them. If there was any definite preventive measure, one would have discussed this in detail and prepared them.
How to cite:
Shah P. India: SUDEP and cultural perspectives. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.