Awareness Is the Greatest Agent for Change
In under-resourced countries like Pakistan, overall epilepsy care is poor. Inadequate medical treatment is attributed to multifaceted problems, including heightened social stigma, poverty, lack of awareness, poor health infrastructure, and an insufficient number of caregivers. These factors collectively contribute to the physical, psycho-social, and economic tribulations, and marginalization of people with epilepsy (PWE). Governmental priorities and resources, both financial and human, as well as technological, are often directed towards more common infectious diseases, while epilepsy remains neglected. The lack of attention exacerbates the challenges faced by individuals with epilepsy. Help from civic society and welfare associations is usually unavailable due to a dual lack of awareness about epilepsy and the associated stigma. Epilepsy Support Pakistan (CECP-ESP) serves as an all-Pakistan-based outreach project of CECP (Child Epilepsy Care Program) for continued and sustained public awareness. It operates in collaboration with the National Epilepsy Centre (CECP-NEC). CECP-ESP is recognized as the full voting chapter of the International Bureau of Epilepsy (IBE).
Changing the Nation’s Mindset
The primary objective of CECP-ESP is to ‘change the mindset of the nation’ towards epilepsy through an intensive and sustained public awareness campaign. Over the last two decades, volunteer doctors from CECP-ESP have planned and executed various indigenous methods for epilepsy mass awareness, achieving significant success. Starting with small initiatives and remaining flexible, older, less productive activities have been replaced with newer, more effective ones, while others continue to run in tandem. We also focus on training primary care physicians, postgraduates, and paramedics to better understand and manage epilepsy, enabling them to provide basic clinical services to people with epilepsy at their doorsteps. This training also empowers them to act as liaisons between specialists when required.
Various projects undertaken to achieve our aims and objectives include:
Public Sensitization Through a Short, Bulleted Message
Effective slogan coined to be used for all awareness activities.
Epilepsy Awareness Stickers on nationwide fleet of ambulances, intercity buses, intercity cargo trucks, oil tankers, and other vehicles.
Graffiti, billboards, roadside banners.
Distribution of awareness pamphlets at epilepsy awareness programs, marketplace, public transports, waiting areas of intercity bus terminals, railway stations, busy traffic signals, banks, supermarkets, outside mosques, and waiting areas of PCP clinics.
Distribution of slogan-engraved souvenirs in various awareness programs.
Cyclic radio transmission of awareness messages several times a day on designated days.
Awareness ticker on cable television during prime time.
Rickshaw awareness campaign; placement of awareness banners on this most used public transportation mode.
Epilepsy awareness rickshaw train; in which 10 rickshaws completely redesigned for epilepsyawareness purposes, ply on roads on a trail and stationing for some time at public places on route to distribute awareness material.
Setting up epilepsy awareness booths on weekends at busy large malls that are frequented by families. Awareness is done through fun and games.
Epilepsy awareness booths at health expos.
Epilepsy awareness walks.
Epilepsy awareness kite-flying festivals (kites with printed awareness slogan)
Art Competition for school children with the topic epilepsy.
Awareness through short live-enacted drama.
Bringing local famous PWE out of shadows and help boost our campaign.
Spreading Detailed Information on Epilepsy
Through print and electronic media; newspapers, magazines, and nationaland private television channels.
School Awareness Workshops for teachers and senior students.
Awareness workshops at colleges and medical and nonmedical universities.
Specially designed illustrated Epilepsy Awareness Posters display life of more than 6 months in schools and public places nationwide.
Awareness workshops for state employed Lady Health Visitors
Specialist talks on television’s news and entertainment channels, with live interactive sessions with the viewers.
Meet the Press sessions.
Epilepsy Podcasts
Structured District Module
Week-long epilepsy awareness activities, sequentially replicated in each district of the country.
Non-medical field volunteers execute and monitor six days of intensive public awareness activities through various modes like banners, announcements from mosques, epilepsy awareness documentary telecast by local cable operators, graffiti, and flyer distribution in the entire district. The most important mode is loudspeaker-mounted vehicles (usually two rickshaws) decorated with awareness banners playing the prerecorded short epilepsy awareness messages whilst plying through every nook and corner of the district and halting at crowded public places.
Free epilepsy camp on day 07 (a Sunday) by volunteer CECP neurologists.
No ASM distribution.
Epilepsy update workshop for local primary care physicians.
Paid Telecast of a Short Comprehensive Television Documentary for Countrywide Awareness, To Change the Nation’s Mindset & Reduce Stigma
Television has reached the homes of the masses in every nook and corner of the country, making it easier to disseminate our awareness message. It has proven to be time and cost-effective with a much wider geographical reach as compared to the previous physical activities of limited volunteer neurologists in a selected region. Also, visual memory is more impactful with long memory retention especially when viewed multiple times over a brief period.
Paid telecast’ of a short educational & non-commercial documentary produced in Urdu, English, Sindhi, Pushto, and Balochi and has been aired on popular satellite television channels since 2012. The frequency of each telecast is twice daily for three months. This documentary has been produced by NEC through a financial grant from M/S. Novartis (Pakistan) who also sponsored the initial paid telecasts. Following telecasts have been possible through the support of other individuals and organizations. It continues to be the major awareness activity.
This documentary has been shown at the ILAE booth at the venue of international epilepsy conferences.
To change the nation’s mindset sustained awareness is necessary for which repeat telecasts are required.
Awareness Activities Through Social Media
Social Media is the new informal current way of coommunication, and we are using these platforms to create awareness.
Edhi Memorial Epilepsy Awareness Lecture for Teachers of
The Mama Parsi Girls Secondary School
July 25th, 2024
National Epilepsy Centre was invited by The Mama Parsi Girls’ Secondary School, Karachi to participate in their health seminar on epilepsy. The interactive session was attended by around 250 teachers. Key topics included recognizing various types of seizures, distinguishing them from similar non-epileptic events, providing appropriate first aid during a seizure, and understanding the emotional and psychological effects epilepsy can have on students. Additionally, myths and misconceptions contributing to stigma were thoroughly addressed.
Such workshops equip teachers with the knowledge to foster a stigma-free environment, allowing students with epilepsy to flourish both academically and socially. It was particularly heartening to learn that Mama Parsi School actively supports students with epilepsy. Currently, the school has six students of different age groups living with epilepsy, and the school management is fully committed to ensuring their well-being and success.
International Epilepsy Day - Sindh TV Morning Show
February 12,2024
Epilepsy awareness through television, the most effective electronic medium was done.
ILAE Sponsored Epilepsy Awareness
Documentary Telecasts
2023
In 2023, International League Against Epilepsy-Asia Oceania supported the telecast of epilepsy awareness documentary on national and regional language television channels as an initiative for WHO’s Intersectoral Global Action Plan on epilepsy and other neurological disorders (IGAP).
A comprehensive month-long epilepsy awareness campaign on state-owned Pakistan Television (PTV) was done during the month of Ramzan. Three major channels of PTV; PTV News, PTV National, and PTV Bolan, telecast the epilepsy documentary multiple times a day throughout the month. Live, viewer-interactive dedicated epilepsy program, Pakistan Time on PTV National (regional multilingual), and Iftar Special Transmission on PTV News were done on weekends.
Telecast of the documentary twice a day for one month was also done on Geo, KTN, VSH, Khyber, and City 42 Channels. https://youtu.be/9QKRGPsJIOA?si=aJhe3-2l0NlRnduK
Epilepsy Awareness Podcast - SDTV
May 04, 2023
SDTV for their YouTube Channel viewers recorded a podcast on Epilepsy & Stigma on May 04, 2023.
https://www.youtube.com/watch?v=6jDF8GE0MRA&t=42s
Epilepsy Awareness – SAMAA TV Morning Show
February 14, 2022
On International Epilepsy Day National Epilepsy Centre’s specialists were invited by Samaa TV to their live Morning Show to talk about epilepsy and related issues. The morning show is widely watched by non-working female members of the households.
Edhi Memorial Epilepsy Awareness Lecture for Mothers of
Kiran Foundation - DCTO Campus Students
March 04th, 2022
On International Epilepsy Day National Epilepsy Centre’s specialists were invited by Samaa TV to their live Morning Show to talk about epilepsy and related issues. The morning show is widely watched by non-working female members of the households.
Edhi Memorial Epilepsy Awareness Lecture at
Inner Wheel School, Karachi
November 16th, 2021
An Epilepsy Awareness lecture for the students of grades 9 and 10 at Inner Wheel School Korangi, Karachi was conducted. About 50 students, 30 mothers, class teachers, and members of Inner Wheel Club, Karachi who run the school attended the session. The session lasted for 2 hours. The interactive lecture addressed stigma, myths, and misconceptions about epilepsy. First aid for epilepsy patients. Information brochures were distributed.
Interview on Voice of America - Urdu
August 2021
Dr. Zarine Mogal was interviewed on ‘Life Three Sixty’ by Saba Shah Khan for Voice of America – Urdu to talk about epilepsy. Dr Zarine spoke about how a seizure can present, the First Aid that is given in case one sees a person seizing, and how the seizures are managed. It is a highly stigmatized disorder that can be only reduced through sustained awareness programs.
International Epilepsy Day
Pakistan Shines a Light on Epilepsy
February 08, 2021
To promote epilepsy awareness, International Epilepsy Day was celebrated in Karachi, Pakistan by National Epilepsy Centre (CECP-NEC) in collaboration with Epilepsy Support Pakistan (CECP-ESP) & Epilepsy Association of Pakistan (EAP). Activities were spread over three days. Doctors from NEC were invited by Samaa FM 107.4 to talk about epilepsy on their popular morning show. The show is heard by children on the way to school and people to work all over Pakistan. This program is heard in other countries too. The feedback from the listeners was very encouraging.
Large-sized banners with epilepsy awareness messages were placed on several pedestrian bridges strategically located on the main traffic artery of Karachi that connects the national highway to the Karachi port and branches to reach other parts of the city. These posters were legible from 700-800 metres.
At National Epilepsy Centre, a lucky draw activity for children with epilepsy was held. The winner got a large stuffed teddy bear.
A press conference was held after dusk at a popular public space, Port Grand located near the Karachi port. The place was beautifully lit up in purple – the colour of epilepsy. The media personnel were briefed about epilepsy and the importance of spreading awareness by the EAP President who also Co-Heads CECP-NEC. The Govt. of Sindh was represented by the Assistant District Commissioner, South. A short awareness documentary and recorded messages President of CECP-NEC and CECP-ESP, the Executive Director of Jinnah Postgraduate Medical Centre, Karachi, and the President of ILAE were also shown.
Epilepsy awareness documentary and audio-visual messages were displayed in a loop on large SMD screens at Port Grand and Burns Road Food Street. The event was extensively covered in media.
The highlight of the International Epilepsy Day Celebration was illumination of national monuments and landmarks in purple; the most significant being the Mausoleum of the Father of the Nation Quaid-e-Azam Mohammad Ali Jinnah. Large awareness banners were placed at these sites for people to associate purple with epilepsy.
Podcast with Rabia Aziz Rizvi of Special Needs Pakistan
May 19, 2020
Special Needs Pakistan run by Rabia Aziz Rizvi provides a platform and a resource network for all people with special needs and their caregivers. The platform provides information about medical facilities and their motto is to promote compassion, tolerance, love, and looking beyond social negativities. A special session for epilepsy was held on May 19th. Dr. Zarine was joined by Prof. Hasan Aziz and all aspects of epilepsy from clinical presentation to social injustice faced by people with epilepsy were discussed during the 30-minute podcast.
Epilepsy Tea - E-Tea
April 13, 2020
National Epilepsy Centre (NEC) and Epilepsy Support Pakistan (ESP) organized a gathering to introduce the Neurology Research and Patient Welfare Fund (NRPWF) and its projects NEC & ESP to a group of concerned citizens of the city. The idea behind it was to invite people to volunteer for ESP to create awareness about epilepsy and plan fundraising events for NEC. The group was shown a documentary to elaborate on the centre’s work. This was followed by a Q&A session with the NEC Team. The event was graciously hosted by Mr & Mrs Columbowala.
International Epilepsy Day at National Epilepsy Centre
February 10, 2020
National Epilepsy Centre (NEC) in collaboration with Epilepsy Support Pakistan (ESP) celebrated International Epilepsy Day. Public awareness posters with illustrations in English and Urdu were put up at NEC for all to read and understand. Eco-friendly bags were specially made for the patient to carry their medicines. Each bag had an epilepsy awareness message printed on it. All children with epilepsy who came to the centre were given goodie bags.
PTV Ramzan Morning Transmission
May 22, 2019
PTV Pakistan Television again invited doctors from National Epilepsy Centre (CECP-NEC) to join them for their special Ramazan live morning transmission which is viewed well, and people are more attentive and responding to social issues during the holy month. Epilepsy awareness through an engaging conversation about epilepsy and responding to viewers’ questions through live calls.
Health Week – LuckyOne Mall
February 15-17, 2019
National Epilepsy Centre (NEC) in association with Epilepsy Support of Pakistan (ESP) took part in Health Week organized by LuckyOne Mall, Karachi. Epilepsy awareness was spread in a festive fun manner with games, face painting for children, and an epilepsy quiz on how much you know about epilepsy. Prizes were given to the winners all bearing the awareness message. Awareness brochures were distributed amongst visitors at the mall. The awareness documentary was played on the loop which captured the attention of many visitors.
PTV Morning Show Subh e Nau
February 11, 2019
In celebration of International Epilepsy Day 2019, PTV (Pakistan Television) the state-owned national television network invited doctors from National Epilepsy Centre (CECP-NEC) to join them during their live morning show Subh e Nau – meaning a new morning. The channel has a strong national as well as international viewership. The team had an active conversation with the show’s host about epilepsy; and the facts and myths surrounding the disorder. During the show, our team also answered live calls from viewers.
International Epilepsy Day – Epilepsy Rickshaw Trail
February 11, 2019
With the success of the previous year’s rickshaw campaign, National Epilepsy Centre (CECP-NEC) with Epilepsy Support Pakistan (CECP-ESP) undertook a month-long campaign using city rickshaws this year as well. Ten Rickshaws were uniformly decorated with public awareness banners. This 30-day drive was initiated on International Epilepsy Day 11-Feb-2019 with a small press conference at the CECP-NEC, and the rickshaw trail was flagged off by the chief guest Dr. Seemin Jamali, Director JPMC, and Prof. Hasan Aziz. The rickshaws trailed, passing through various parts of the city, halting at public spots, and distributing awareness material. The entire city was covered in parts for over a month.
International Epilepsy Day – Epilepsy Awareness Banners on Rickshaws and Prominent Public Places
February 12, 2018
As part of the International Epilepsy Day 2018 celebration, National Epilepsy Centre (CECP-NEC) in collaboration with Epilepsy Support Pakistan (CECP-ESP) undertook a week-long campaign of putting up panaflex epilepsy awareness banners on city rickshaws. Rickshaws are a popular mode of public transport in Karachi and reach every nook and corner of the city. As part of the epilepsy awareness campaign posters and banners were also put up in prominent public places all over the city.
International Epilepsy Day – Public Awareness at
Karachi’s Largest Shopping Mall
February 11, 2018
On International Epilepsy Day 2019, National Epilepsy Centre (CECP-NEC) and Epilepsy Support Pakistan (CECP-ESP) collaborated with LuckyOne Mall, Karachi, and organized a day-long epilepsy awareness program in the main area of the mall. The program included the distribution of epilepsy material and interaction with anyone who wished to know more about epilepsy from our team of doctors. For children, there was face painting as well as a dart board game with true or false statements about epilepsy. The person with the most correct responses was given a prize. An epilepsy information brochure was distributed.
Epilepsy Awareness in Educational Institutions by
Medical Students of JSMU
February 2018
National Epilepsy Centre (CECP-NEC) collaborated with Jinnah Sindh Medical University (JSMU) and JSMU Student Council to spread epilepsy awareness in the city’s schools & colleges. A group of 7 enthusiastic JSMU students were trained at CECP-NEC by Dr. Zarine Mogal & Dr. Hiba Mahmud. The month–long activity ended with an awareness session on Feb 24, 2018, for students – medical & non-medical, teachers, people with epilepsy & their parents at the JSMU auditorium. Prof. Tariq Rafi VC, JSMU gave a welcome address. The JSMU Student Council put up a skit of a street scene in which a person has an epileptic fit & how people react. Lectures on the Enigma of Epilepsy, Epilepsy and its Treatment, and Myths & Misconceptions were delivered by Prof. Hasan Aziz, Dr. Zarine Mogal & Dr. Ghazala Usman. The awareness documentary was shown. The students had set up a photography corner with creatively made awareness slogans, masks, and photo frames for participants to photograph with, as an event souvenir. Certificates were distributed among students who worked extremely hard to make this event a success. THE HIGHLIGHT OF THIS ACTIVITY WAS A FINAL YEAR MEDICAL STUDENT OF JSMU – UMME AMMARA WHO PUBLICLY DECLARED TO HAVE EPILEPSY SINCE CHILDHOOD BUT THIS HAS NOT HELD HER BACK IN ANY WAY. –long activity ended with an awareness session on Feb 24, 2018 for students – medical & non-medical, teachers, people with epilepsy & their parents at the JSMU auditorium. Prof. Tariq Rafi VC, JSMU gave a welcome address. The JSMU Student Council put up a skit of a street scene in which a person has an epileptic fit & how people react. Lectures on Enigma of Epilepsy, Epilepsy and its Treatment, and Myths & Misconceptions were delivered by Prof. Hasan Aziz, Dr. Zarine Mogal & Dr. Ghazala Usman. Awareness documentary on NEC was shown. The students had set up a photography corner with creatively made awareness slogans, masks, photo frames for participants to photograph with, as an event souvenir. Certificates were distributed among students who worked very hard to make this event a success. THE HIGHLIGHT OF THIS ACTIVITY WAS A FINAL YEAR MEDICAL STUDENT OF JSMU – UMME AMMARA PUBLICLY DECLARING TO HAVE EPILEPSY SINCE CHILDHOOD BUT THIS HAS NOT HELD HER BACK IN ANYWAY.
International Epilepsy Day - Public Awareness Seminar
February 13, 2017
National Epilepsy Centre (CECP-NEC) with Epilepsy Support Pakistan (CECP-ESP) celebrated International Epilepsy Day by holding a public awareness seminar in collaboration with Mir Khalil-Ur-Rehman Memorial Society (Jang Group) at the Najmuddin Auditorium, JPMC. Patients with epilepsy, their caregivers, medical care providers, and people from all strata of life attended the event. This seminar was dedicated to (Late) Mr. Abdul Sattar Edhi, who himself had epilepsy and championed the cause and was an inspiration to hundreds of thousands of people with epilepsy in the country. The highlight of the awareness seminar was people with epilepsy talking on a public platform about their life with epilepsy; their trials and tribulations and how they overcame it to become high achievers and lead a normal life. Wide and detailed media coverage all over Pakistan of the event further enhanced the awareness. Awareness through FM Radio, billboards, and posters was also done.
Celebrating Women with Epilepsy on
International Women's Day
March 8, 2016 – Karachi
On International Women’s Day, National Epilepsy Centre (CECP-NEC) and Epilepsy Support Pakistan (CECP-ESP) organized an event that highlighted special issues unique to women with epilepsy. The event was designed around the theme of International Women’s Day – Step it up for gender equality. An interactive session with young courageous women who despite having epilepsy are successful members of society was held.
Purple Day - A Public Awareness Program
March 26, 2013
National Epilepsy Centre (CECP-NEC) and Epilepsy Support Pakistan (CECP-ESP) in their continuous endeavors to promote awareness about epilepsy in the public organized an awareness program. People from all strata of life attended the program. The lectures given were mostly illustrative in simple local language for easy understanding and covered topics about epilepsy and its presentation, issues with women and the geriatric population with epilepsy, and its treatment.
Pakistan Stands Up For Epilepsy
January 2012
With the slogan “Stand up for Epilepsy” various sports celebrities from all member countries of ILAE stood up with people with epilepsy to create awareness of the disorder among the masses. In our country we had our two cricket stars Moin Khan and Shahid Afridi, who took time from their busy schedule to stand up for the cause.
