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“Helping Other People with Epilepsy” (HOPE) sessions were held in Mumbai. The aim of the HOPE meetings was to educate and empower patients, caregivers and relatives with the day-to-day challenges they encounter in their lives.
An expert neurologist practicing in the area of epilepsy provides his setting either in the clinic or in the hospitals. Patients, relatives and caregivers are being educated while they are waiting in the clinic or hospital waiting area. The session usually consists of a video on epilepsy and its signs and symptoms, first aid measures of Dos and Don’ts during seizures and side effects of medications. The session also addresses the social issues faced by the patients. Patients usually ask about the academics, job opportunities, driving, playing sports, marriage and pregnancy. Handouts on Dos and Don’ts and frequently asked questions were distributed to the patients. Furthermore, old patients also shared their experiences about the disease, and it helped newer patients to know more about the disease and share common experiences.
Overall, in 2-hour sessions, about 30 patients are being educated and empowered. The patients and caregivers took this opportunity to clear their doubts and misconceptions. Also, it encouraged us that such activities are very useful as it provides a good support system to all. Few of the patients are being followed up, and they did refer other patients to utilise the services. In conclusion, these patient education activities are being found highly effective and it would continue as new patients will be enrolling for the programme.