Samman Association

Rural Epilepsy Clinics

The first rural epilepsy camp conducted by the IEA and assisted by Samman patients was held on 18th November 2007 at Pen in Raigad district. Every 6-8 weeks since then a comprehensive epilepsy care team consisting of a Neurologist, General Physician, Psychologist, Special Educator and volunteers from Samman the epilepsy support group have been conducting camps at the same venue,   5 basic AEDs : Phenobarbitone, Phenytoin, Carbamazepine, Sodium Valproate, and Clobazam  are distributed to the patients. At the very first camp it was observed that many patients had visited doctors but due to the expense of AEDs, availability and travel (cost & distance), their medical compliance was poor.

We are truly grateful to Ashokbhai Parekh who provides us with the infrastructure each time we hold the clinic. The clinic continues to date.

After the 24th successive clinic (18.11.03-13.2.11) we did a research. Findings are as follows:

Average attendance at the first 3 clinics was 41 and 92 for last 3 clinics. 322 patients attended these clinics, of which 228 had epilepsy. For our research group we wanted to take only those who had regular attendance and had come for a minimum of 6 months. Hence we have taken only those who have 50% attendance and have attended a minimum of 3 clinics (N83). At the outset we liaised with the local doctor, pathologist, special school & rehabilitation center and chemists in the area. Festivals and National Epilepsy Day were celebrated during the course of the year leading to more interaction among the patients and caretakers.

Results: A comparison of data 6 months prior to clinic versus last 6 months of treatment revealed that 48% of the research group had attained 6 months seizure freedom (of which 2 had successful surgeries). The rest had a 91% average decrease in seizures. 59% had done EEG/CT/MRI before attending the 1st camp. 30% had a treatment gap of an average of 12 years.

Conclusions: Proper documentation, regular follow up, group talks, counseling, educational and vocational guidance, improved compliance and seizure control.

There is a shift in thinking in rural areas, with people coming forward to be investigated and treated. Non-affordability, non availability of medication, long distances to travel, medicine not helping and side effects were reasons given for irregular compliance. Verbal reports suggest that patients seek medical help but do not realize the importance of continuing medication for 2-3 years after seizure freedom.

Success Stories
At the first camp Sita, a young woman, informed us how she was deeply traumatized when her husband left her despite signing a legal document before the wedding that stated he was aware of her epilepsy. Today after attending the camps over three years Sita is a confident, empowered woman who has successfully re-married. We were also very happy to note that during this time three young women got married, two became mothers, five students successfully completed school and three young men became gainfully employed.

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