INDIAN EPILEPSY ASSOCIATION, Bombay Chapter EPILEPSY WEEK - AWARENESS & CELEBRATION PROGRAMS - 2012

Every year, in the month of November, SAMMAN members look forward to participating in a cultural and awareness program. This year too there was education and enjoyment. Kavita Shanbhag arranged two radio awareness programs, one in Hindi with Dr. Urvashi Shah (Trinayani FM Radio 7th Nov) on their program 'Mud Mud Ke Na Dekh' which specializes in creating disability awareness and one in Marathi on Asmita Vahini FM Rainbow radio channel with Dr. Sushil Tandel which was aired on 16th November. On 21st November we had an epilepsy awareness program for employees at Axis Bank at their corporate office in Worli. The program was initiated by epilepsy supporter Meera Rajendran who works with Axis Bank. Dr. Urvashi Shah, Ignatius Misquitta, Kavita Shanbhag and Carol D'Souza participated in the program.

On the 24th of November at Ravindra Natya Mandir mini auditorium we had a 3 hour 'Epilepsy Appreciation Day' program. After the prayer and traditional lighting of the lamp, Samman members commenced the program with a welcome dance.

Prior to the program we requested many neurologists to ask their epilepsy patients and their caregivers to apply for the Living Courageously with Epilepsy (LCWE) Award and the Most Supportive Caregiver (MSC) Award. Shenaz Haveliwala who in her story recounted her trials and tribulations with epilepsy won the LCWE Award which comprised a certificate and a cheque of Rs.5000/-. The most supportive caregiver award was shared by 5 persons: Rita Fernandes, Malini Alate, Manisha Thosar, Usha Badri & Malti Barade who each got a certificate and a cash prize of Rs.1000/-. We also had a fancy dress competition which was very enjoyable. The 1st prize was awarded to Christopher Fernandes for his dress and rendition of a coolie's life; the second was awarded to (Dr.) Ashish Borgaonkar whose prescriptions for a healthy life regaled all and the 3rd prize was shared by Yasmin Rodrigues who came 'All Wired' and 'Desi Cowboy' Nitin Agarwal.

Carol D'Souza presented on 'What's Going Right In Our Lives' which detailed how technology, government programs (health insurance, education, disability law), and new drugs, are helping in better diagnosis, treatment and rehabilitation of persons with epilepsy. She also took a positive look at Epilepsy & Marriage and Epilepsy & Employment and how ECell/ Samman is helping empower people with epilepsy.

We also took the opportunity, at this program, to remember Alpana Palan one of our very dear members who passed away very suddenly on the 15th of November 2012.

The second half of the program comprised a musical program put up by our member and long-time supporter Ashokbhai Parekh, his Guru Gagan Singh and teenage vocalist Priyanka and backup musicians. Their lively performance brought on stage very many members who danced with such gay abandon that it was a pure joy to watch.

The program will be etched in our memories for a long time to come.

Carol D'Souza
INDIAN EPILEPSY ASSOCIATION - BOMBAY CHAPTER ECELL J.S.S. Municipal School Building, Nana Chowk, Mumbai 400007 NATIONAL EPILEPSY DAY ( WEEK ) CELEBRATIONS 2011 - In Mumbai
- Carol D'Souza

Epilepsy week is always a time to raise awareness and celebrate. This year there were two reasons to do so: IEA completed 40 years and SAMMAN our epilepsy support group completed 20.

Epilepsy awareness programs in Mumbai began on the 13 th of November with a program organized by the epilepsy team of Kokilaben Dhirubhai Ambani Hospital, at their hospital in Andheri.

On the 15 th November IEA Mumbai Chapter organized a Press Conference at the Press Club Mumbai. Dr. Pravina Shah spoke on Epilepsy Management & Treatment whilst Dr. Urvashi Shah addressed the psychosocial aspects of epilepsy. Carol D'Souza then enumerated what the IEA / Samman has achieved in the last 40 / 20 years. 18 persons from the media (print & TV) attended this event, after which we got coverage in the Indian Express, Maharashtra Times & Sakal newspapers.

On the 16 th of November a radio interview with Kavita Shanbhag was aired on Rainbow FM News channel. This is a Marathi channel which has a large rural and urban reach in Maharashtra. And on the 16 th and 17 th of November we had an awareness drive at Highstreet Phoenix, a large and busy mall in Mumbai city. A lot of people enquired about our activities and were given leaflets and brochures.

The Epilepsy Foundation held awareness campaigns at the two busiest railway stations: Churchgate & Chatrapati Shivaji Terminus (formerly VT) on the 17 thof November. The same day they also had street plays at different timings at Dadar, Dadar TT, Andheri, Ghatkopar, Borivli and Thane.

Two other support groups had events: 'Uttejan' held an all MaharashtraTalent Contest for people with epilepsy and 'Protsahan' held an epilepsy awareness program in Dombivli.

The week ended with the E 40-20 (40 years of IEA and 20 years of SAMMAN) celebrations atHotel Krishna Palace on 19 th evening. This program was both informative and entertaining. Dr. Joy Desai spoke on Epilepsy & Teens enumerating the special problems faced by teens with regard to studies, staying up nights, taking up sports etc and suggested ways in which teens are can meet with these challenges. Carol D'Souza presented on IEA Bombay Chapter's achievements these past 40 years; how after the formation of SAMMAN, having patient volunteers and a place (ECell) we were able to increase our activities manifold and are today able to offer Counselling, Special Education, Yoga & Meditation, Support Group meetings, Medicines at a discount, Sheltered work, Skill training and Rural epilepsy clinics. Dr. Ravin Thatte who is an activist, author and cosmetic surgeon gave us insights on how to refuse to be unhappy. This enlightening and practical talk was a good morale boost for persons with epilepsy, their families and professionals. There were awards and felicitations as well. The 'Achiever of the Year'; award went to Santosh Tholar and Keyur Vaghela. Santosh in spite of his seizures has adapted to the demands of running a publishing and printing business whereas Keyur recently got his Bachelor of Arts degree overcoming great challenges. Sachin Khot who is married to our own ECell caretaker Sharvari received 'The Caregiver of the Year' award for the loving support shown to his wife over the last 3.5 years. Dr. Pravina Shah was felicitated by Samman with a shawl and a specially designed album which photographed her journey from her days at KEM Hospital to current day. Samman also presented her with a collage of photographs which had the words 'Thank you for being with us'. It was a joyous moment for all of Samman when earlier this year she was given the Social Accomplishment Award. Many of our other supporters were given roses in appreciation.The highlight of the evening was the dance performance by Samman members to popular Bollywood numbers 'ChamakChalo' 'Chance Pe Dance' 'Darling' and 'Om Shanti Om', with everyone coming on the dance floor at the end of the last number. A sumptuous buffet dinner ended the perfect evening.

ACTIVITIES FOR THE YEAR APRIL 2010 - MARCH 2011

SYNOPSIS

A synopsis of our activities is as follows:

  • Given information over the phone and to visitors
  • Conducted individual, family & group counselling
  • Given special / remedial education
  • Conducted yoga classes
  • Given medicines at a reduced rate
  • Had Support Group Meetings on the 2nd and 4th Saturdays of each month.
  • Conducted Awareness Programs at Schools
  • Conducted rural epilepsy camps
  • DETAILS OF OUR MAIN PROGRAMS

    1. RURAL EPILEPSY CAMPS, PEN

    Six rural epilepsy camps were held at Pen, Raigad district on the following dates:
    1st May, 2010
    27th June, 2010
    22nd August, 2010
    24th October, 2010
    19th December, 2010
    13th February, 2011
    An average of 91 patients attended each camp.

    We are indeed thankful to Mr. Ashokbhai Parekh who continues to provide us infrastructure to conduct this camp which started on 18th November 2007, and thankful to General Physician Dr. Wagle of Conwest Jain Medical Research Society who attends to patients at each camp along with Dr. Pravina Shah and Samman volunteers.

    2. E-STAR (EPILEPSY STUDENT & TEACHER AWARENESS REACHOUT)

    In the months of November 2010 -January 2011 we had a school awareness drive and essay competition. Letters were sent to approximately 250 schools in Mumbai with a request for permission to conduct an epilepsy awareness program. We were happy to conduct programs at the following schools:

    a. Sir J.J. Girls High School, Fort, 2nd November 2010
    b. Loretto Convent, Chembur, 3rd November 2010
    c. Pawar Public School, Bhandup West, 23rd November 2010
    d. Modern School, Sikka Nagar, Girgaon, 30th November 2010
    e. Devji Nanji Anchorwala High School, Chinchpokali, 9th December 2010
    f. S.M. Shetty International School, Powai, 10th December 2010
    g. Seventh Day Adventist High School, Sanpada, Navi Mumbai 7th January 2011
    h. Podar International School, Nerul, Navi Mumbai, 10th January, 2011
    3. SUPPORT GROUP MEETINGS, 2nd & 4th Saturdays

    Each of our support group meetings focuses on a different topic and each member voluntarily gives his/her views on the topic.

    Date
    Topic
    12th Mar '11 My Relationship With God
    12th Feb Final plans for E-Con 2011
    12th Mar '11 My Relationship With God
    8th Jan New Year's Party
    22nd Jan Role play: members enacted their responses to different situations
    27th Nov Public speaking - Members was given 1-5 minutes to speak on a topic of his/her choice
    25th Sept Sharing - current news and our views
    9th Oct Members help mail letters to schools
    23rd Oct Discussion of program for national epilepsy day celebration
    28th Aug What can you do if seizures do not come under control?
    14th Aug What does independence means to us?
    22nd May A look at the year ahead and the activities we would like.
    12th May Why the Stigma in Epilepsy?
    24th April Celebration of birthdays - members spoke about their love for Dr. Pravina Shah and the impact she has had on their lives.
    10th April The importance of forgiveness and humility
    4. (Due to heavy rains in June and July we could not have meetings)
    5. EPILEPSY DAY CELEBRATIONS - 17th November 2010, Krishna Palace

    This year the theme for epilepsy awareness was 'Epilepsy - Women & Children'. The educative part of these celebrations had a monoact play put up by Kavita Shanbhag on the life of a woman with epilepsy. Dr. Pravina Shah also had a chat with women with epilepsy, whom she called from the audience, and asked them various questions regarding coping with epilepsy after onset, their experiences in relation to getting employment, finding suitable suitors, marriage, children etc. Carol D'Souza presented on powerpoint the activities of the Association. We also felicitated Ashokbhai & Hemaben, Dr. Dhruv, Dr. Wagle and Ruchi Saxena for their support to our activities.

    6. EXHIBITION CUM SALE - December 4, 2010 - Indus festival of charities

    This year we could only participate in one exhibition cum sale which was held at the YMCA Colaba. As usual we enjoyed interacting with the other participating NGOs and selling our products. We were already committed to other programs during the other 2 other exhibitions organized for NGOs.

    7. E-CON 2011 – LUDHIANA – 25 th & 26 th of February

    13 Samman members / caregivers attended this very enriching and well organized conference. We congratulate Dr. Urvashi Shah on receiving the Bajoria Award at this conference. Her oration on Epilepsy Beyond Seizures was very well received. Members also enjoyed the visit to the Golden Temple in Amritsar and the trip to Wagah Border.

    8. NEW YEARS PARTY 8 th Jan

    All the elements of a good party were present: lots of fun and games and a lot of prizes and good food.

    9. DISABILITY MEETING AT NAGPUR

    As the Amendments of the Rights of Persons with Disability Act 1995 is being taken up again, Kavita Shanbhag and Carol D'Souza attended a meeting held for this purpose at Nagpur on 22nd and 23rd March. We have suggested that Drug Resistant Epilepsy should fall under the list of disabilities and under 'Reservations' for jobs. This was accepted by the other NGOs present. This new Act (Rights of Persons with Disability Act 2011) will have to be passed by parliament before it can come into force.

    10. UTTEJAN

    (Positive Reinforcement) the Thane Epilepsy Support Group celebrated their 1st anniversary on February 6 2011. Many of our members joined them in their celebration.

    11. At the 8 th Asian Oceanian Epilepsy Congress held in Melbourne in October 2010,Kavita Shanbhag was awarded the “Outstanding Person With Epilepsy Award”. This award is given every 2 years at the AOEC (next AOEC will be held in Manila) and any person with epilepsy can apply for it. Nominations have to be sent through the respective chapter.

    12. E-REHABILITATION

    From the month of April 2010 to February 2011 we had art, craft and general knowledge classes twice a week conducted by Shenaz Haveliwala. We also had counseling sessions with the participants and their families.

    13. ART AS THERAPY

    Kavita Shanbhag who is in the process of doing the Art Based Therapy course has started conducting sessions at ECell for our members. Our members are enjoying the experience and look forward to continuing the classes in 2011-12.

    14. BLOG:

    Ecellin.wordpress.com has had a good viewership. It was viewed 1400 times in 2010. As promised at our epilepsy day function the blog will now (April onwards) contain an interview with Dr. Pravina Shah.

    IEA Bombay Chapter Office Bearers for the year 2011-12 Address Office Bearer
    Dr. B.S. Singhal MRC Wing, 1st floor, BombayHospital,12, Marine Lines, Mumbai 400 020,Tel: 22068787,Email: ktvania@vsnl.com President
    Dr. Pravina U. Shah 191 GodrejTowers No.4 Station Road, Vikhroli East Mumbai 400 079 Tel: 9820010328 Email: drpushah@yahoo.co.in Hon. Secretary
    Mr. Ashokbhai Parekh 90 Neeta, 3rd floor, flat No.1 E Road, Marine Drive Mumbai 400020 Tel ® : 22812039 Treasurer
    Dr. SangeetRavat 202/96, ParvatiPrerana, Dixit Road, Vile Parle(E), Mumbai 400 057 Tel: 9820310850 Email: ravatsh@yahoo.com Vice President
    Dr. Urvashi Shah B-42, Beach Queen, JuhuKoliwada, Santacruz(W), Mumbai 400 049 Tel. 9821335713 Email: shahurvashi@vsnl.net Joint Secretary
    Carol D'Souza 501 Silver View, Chimbai Road Bandra West, Mumbai 400 050 Tel: 9819029338 Email: ecellin@yahoo.co.in Vice President
    KavitaShanbhag E/15, Karnatak Bldg., Mogul Lane, Mahim, Mumbai 400 016 9820256731 Email: kavitashanbhag@yahoo.com Vice President
    HIGHLIGHTS OF ACTIVITIES OF MUMBAI CHAPTER
    Epilepsy Awareness Programs - November 2009

    The Bombay Chapter of the Indian Epilepsy Association had 4 programs in the month of November.

    9th November - Press Conference

    22 reporters came for the press conference. After an opening prayer by Kavita Shanbhag, and presentations by Dr. Pravina Shah, Carol D'Souza and Dr. Sangeeta Ravat, the press interacted with people with epilepsy and caregivers. Some press members interviewed Dr. Sangeeta Ravat. The outcome of this conference was 9 press articles in different languages and an airing on Doordarshan Sahyadri channel. Cheers to a healthy association with the press to raise epilepsy awareness and improve the quality of life of people living with epilepsy.

    11th November - Medical Camp at Pen

    It's been 2 years since we started the medical camp at Pen for people with epilepsy in the rural district of Raigad. This 16th camp had the maximum turnout of 80 patients! 22 of them were new cases. A local TV channel covered this camp and the patients decided that they too needed to form a support group. One of the patients volunteered to take the lead. There was a session where feedback from patients was obtained and a counseling session followed. The prognosis of the follow up patients is very good and encourages us to continue with this project.

    15th November - Picnic to 'Silent Hills Resort' a Water Park

    The picnic to Silent Hills Resort was anything but silent! It was filled with fun & games and prizes galore. The guys, girls and little children enjoyed the water and the rain dance. For that one day 70 of us enjoyed the 'openness and fresh air'. The well landscaped resort is spread over 60 acres of sprawling lush green hills in Manor and is perched on the confluence of two perennial rivers, the Vaitarna and the Deherj. The picnic also had an informative and healing aspect. Before lunch, Psychiatrist, Dr. Manoj Bhatavdekar spoke to people with epilepsy and caregivers about 'reducing tension' and 'proper communication' after which caregivers had a lot of questions for him.

    29th November - Epilepsy Education for General Practitioners & Launch of Bombay Chapter Website: ieaecell.org

    The IEA, Bombay Chapter along with the General Practitioners' Association of Greater Bombay organized a one day epilepsy education program for GPs at the Krishna Palace Hotel, Grant Road. It was well attended by approx. 90 general practitioners who came well on time for the program.

    The different sessions focused on:

  • Clinical Spectrum
  • Investigations
  • Medical Management
  • Surgical Management
  • Epilepsy Comorbidity
  • Special Issues in Children
  • Prevention of Epilepsy
  • We are thankful to Dr. Jayanti Mani, Dr. Sangeeta Ravat, Dr. Joy Desai, Dr. C. Deopujari, Dr. Urvashi Shah, Dr. Anaita Hegde and Dr. Pravina Shah who were the faculty members. Dr. Meeta Adhiya & Dr. Deepak Jumani of GPA and Dr. Pravina Shah and Dr. K.N. Shah chaired the sessions.

    We also took this opportunity to launch the website of the Bombay Chapter: ieaecell.org. Dr. Pravina Shah thanked Dr. S.N. Bhagwati for supporting this website and our web designers Santosh Tholar and his partner Himanshu of Neoadvertising. Carol D'Souza briefly described the site. At the end of the day we felt that this program was well worth the effort.

    We appreciate the enormous support provided by UCB India Pvt Ltd that made the month of November, usually celebrated as 'Epilepsy Month', very successful.

    17th November, 2009 - Ad in Times of India

    A one page ad was brought out by UCB India Pvt. Ltd. In the Times of India, Mumbai, Delhi, Bangalore, Hyderabad, Ahmedabad & Chennai editions. This ad which was very well laid out brought out important aspects of epilepsy and focused on prevention as well. Dr. Pravina Shah, Carol D'Souza and Ruchi Saxena of UCB India Pvt. Ltd. worked hard to coordinate with various neurologists from all over India to get articles for this full page ad.

    HIGHLIGHTS OF ACTIVITIES OF MUMBAI CHAPTER
    EPILEPSY CAMP AT PEN DISTRICT - 18TH NOVEMBER, 2007

    At the last Annual General Meeting of the Indian Epilepsy Association, it was decided to do a rural epilepsy camp. This decision finally became a reality on 18th November, 2007. Our journey began on the 17th, we left Mumbai at 7 p.m. and after a couple of hours reached the Kala Niketan farm house at Pen where the caretaker Mr. Nareshbhai, who helped a great deal with preparations for the camp, had a hot meal waiting for us. Preparations began a month in advance. The Sarpanch of Pen District Mr. Bhonsle, and Mr. Nareshbhai came to Mumbai to meet with Dr. Pravina Shah who is the Hon. Secretary of the Association and a Consultant Neurologist, and after noting the details, prepared pamphlets which were then distributed to the villagers and put on almost all the trees in the district! Even the chemists in the area advised their relevant customers to attend the camp.

    People from the village (approx. 95 km out of Mumbai) kept coming right from 9.30 a.m. to 3 p.m. By the end of the day we had assessed 31 patients out of which just 3 did not have epilepsy. A team of professionals and paramedicals as well as people with epilepsy from 'Samman' the epilepsy support group and two homoeopaths helped at the camp and attended to the patients. Whilst some patients were being investigated others in the waiting area watched and learnt from epilepsy films and spoke to Samman members. As most of the patients were very poor and were not getting medical help as a result, they were given free medicines.

    After seeing the patients, Dr. Pravina Shah educated them and their family members about the disorder as well as the do's and don'ts during a seizure and spoke about good habits like eating regular meals and not fasting, taking medications on time, exercising, and having a good 8 hours of sleep, all of which promote wellbeing and help control seizures. Dr. Shah emphasized that epilepsy was a brain disorder and was not caused by evil spirits or black magic and that smelling an onion or a shoe did not bring a person out of a seizure. She informed that seizures normally last for 3-5 minutes irrespective of whether one smells an onion or not.

    Dr. Shah then felicitated Mr. Bhonsle and Mr. Nareshbhai as well as Ashokbhai and Hemaben from Kalaniketan for all their help in making the camp a success. Before the meeting ended the patients and family members were asked to come for a follow up on the 16th of December, the date of the next camp.

    The Indian Epilepsy Association, Bombay Chapter hopes to make a difference to the lives of people with epilepsy in Pen, and this is just the beginning.

    Carol D'Souza
    Vice President, IEA Bombay Chapter