SOUTH EAST ASIA REGIONAL EXECUTIVE COMMITTEE MEETING
8th Asian & Oceanian Epilepsy Congress
Melbourne conventional and Exhibition Centre
FRIDAY 22 October 2010 at 9.30 in Room 108 Level 1 MEC
Chair: Dr. H.V. Srinivas
Vice Chair: Dr. M. M. Mehndiratta
Secretary: Dr. M Mannan
Ex Officio: Dr. V.S. Saxena Vice President IBE
MINUTES OF THE MEETING
Dr. H.V. Srinivas Chair, SEAREC welcomed the members for the meeting.
The following members & invited members were present:
- Dr. H.V. Srinivas – Chair, (India)
- Dr. V. S. Saxena – Vice President, IBE (India)
- Anchor Hung – Advisor, Hong Kong Epilepsy Association (Hongkong)
- Mabel LT – Chair Lady, Hong Kong Epilepsy Association (Hongkong)
- N G Wai Hung – Editor, Exec. Member, Hong Kong Epilepsy Association(Hongkong)
- Dr. Kaulaya Dhiravibuly – Chair Lady, Epilepsy Association of Thailand (Thiland)
- Dr. Araya Charuvanij – Secretary General, Epilepsy Association of Thailand (Thiland)
- Ann Little – Executive Director, IBE
- Dr. Man Mohan Mehndiratta – Vice Chair, (India)
- Dr. Muzharul Mannan – Secretary l, SEAREC (Bangladesh)
Dr. H V Srinivas presented a report of the activities of various members of the Region in a power point presentation.
There are 7 Full Members in the Region: Bangladesh (Mannan Muzharul), Hongkong (Ted Chiu), India (Mehndiratta), Indonesia (Silvia Lumempouw), Nepal (Man Pradhan K), Sri Lanka (Mangala Samarawickreme) and Thailand (Araya Charuvanji) and 2 Associate Members: Hong Kong Enlighten Hong Kong (Orla Gilroy), Yayasan Epilepsi Indonesia. The following are yet to become Members: Bhutan, D PK Korea, Maldives, Myanmar.
Indian Epilepsy Association has 28 chapters.
Many chapters are actively pursuing the goals of IBE to dispel the myths, misunderstanding & stigma attached to epilepsy. General methods adopted include Lectures to lay organizations, schools, colleges, Rotary, Lion etc, Articles in Newspapers, magazines – in English, Hindi & regional languages Talks, interactive sessions on TV, Radio. Other Methods are Epilepsy camps, Distribution Antiepileptic drugs, Picnics for Person with Epilepsy, Drawing competitions, Free counseling services. Newsletter Quarterly Issue by IEA Central Office and Local Chapters eg/- Bangalore, Mumbai, Indore, Lucknow , English and in Regional languages.
National Epilepsy Day is being held on 17th of November every year, an event – one day to one week, by all the Chapters of IEA, to create National Awareness. IES / IEA 18th IEC TRUST have formulated Guidelines for the management of epilepsy in India (Gemind) in 2008, Epilepsy teaching programme in 2010, Educational film on epilepsy 2010. Diploma in Epilepsy Care (DEC) Distance Education Course started for Non medical persons in 2005 in collaboration with CBR Network, Indian Epilepsy Association, & Bangalore University. So far 27 students completed the courses, 14 students have enrolled this year. While these are the activities of Central Office, several chapters in the country have added innovative /novel methods.
IEA Bangalore chapter conduct Street plays /Road shows for public education in rural / semi urban areas,. Started in 2000- (one Sunday of every month). 225 plays done so far.
IEA Tirupathi Chapter has unique distinction of conducting Special monthly camps for persons with Epilepsy, since February 1999. (144 camps were conducted ). An average of about 400 patients are given free medication every month.
IEA Pune Chapter has initiated Epilepsy Marriage Bureau and Matrimonial Meet in Pune 2006, 16 families in this bureau showed interests in each other and of these 8 couples have got married. The second meet is due shortly.
IEA Bombay Chapter conduct regular Parents/Caretakers Rural Epilepsy Camp-, at pen in Raigad District, since 2007, (so far 21 camps held). Anti Epileptic Drugs are distributed at subsidized rates. Five films have been made so far, Samman (Self respect) is used at school awareness programme.
AWARDS in 2010 – Asian and Oceanian Outstanding Achievement Epilepsy Award’ – Prof. P Satish Chandra, Bangalore. Outstanding Person with Epilepsy Award – Ms. Kavita Shanbahag, Mumbai.
Report from other members
Enlighten Action for Epilepsy Hongkong (Orla Gilroy, CEO)
Activities include Bilingual Epilepsy Support & Community Welfare programmes, Family Day, Childrens Day, Bilingual Community Epilepsy education and training Programmes. The Sunflower Schools Epilepsy Awareness Programmes Information and Educational Booth.
Epilepsy Association of Thailand (Dr. Araya Charuvanij)
Epilepsy bulletin Annual meeting among patients, care givers and doctors . Painting and Essay competition; Epilepsy Camps, talks to school children and teachers.
Nepal Epilepsy Association (NEA) (Kabindra Man Pradhan, General Secretary)
Activities include Epilepsy clinics in Kathmandu and Dolakha remote mountain village since several years; provision of free AED Providing scholarships to poor students assisting in Orphanages, Hospital and Health centers as well. 700 Patients are in regular followup at Epilepsy Center, Kathmandu . Mobile clinic are also in place.
Indonesian Epilepsy Association (Dr. Achdiat Agoes, Secretary)
Meetings to get in touch with all members in Middle and East Java Chapter Pilot project in Malang, East Java.
I am sure there are many more activities carried on by various chapters in India and other member countries too just that they are not being reported.
To Sum Up
Efforts are being made by various Organisations affiliated to IBE to dispel myths, prejudice and stigma attached to epilepsy. Much more needs to be done. To enroll more countries of SEA Region to become members of IBE and To persuade other organisations to report and to share their experiences.
Discussion by other members
Dr. Mehndiratta mentioned that the National Epilepsy Day in India is being celebrated on 17th on November every year and the theme for the year 2010 is Women, Children & Epilepsy. During this event a book mark is to be distributed to the children in various schools and a movie on Epilepsy to be screened during the proceedings.
Dr. V S Saxena detailed about the film, which is produced by IEA 18th IEC Trust a 80 minute documentary version of a 7 year old child who developed seizures and how the family and society copes up with the situation. The film is in Hindi with subtitled in English and regional languages.
Ms Anchor appreciated the introduction of long distance course DEC by IEA. She elaborated the efforts made by their Association to change the Chinese name of Epilepsy which means crazy to be replaced by another word which means related to brain.
Mabel LT, N G Wai Hung – Establishment of a local network of Mutual Support Groups, periodical visits to the patients and their families to recognize their difficulties and provide support, quarterly newsletters , training campaigns, medical talks and seminars. This year in 2010, we have started the event of New Name for Epilepsy Ceremony cum Positive Change, Co-creating Harmony Symposium. A new Chinese name is officially launched in June 2010. .
Dr. Araya Charuvanij – The EAT has 14 executive committee members including physicians, pharmacists, technicians and parents of the affected children. At present there are 996 registered members. Among them 618 are patients and care givers, 256 are physicians and the rest are from primary schools. The incidence of epilepsy in Thai people is about 5.9 ¬- 7.2 per 1,000 . (About 383,500 -468,000 PWE). The majority of the patients were treated and followed by general practictioners owing to the limited number of neurology specialists who are confined in the university or the regional hospitals and few general hospitals. The regular activities included.
Dr Mannan – briefed about the Bangladesh Epilepsy Association which was started in 1992 and affiliated to IBE in 2005. They have 37 members of which 20 are doctors and the remaining, patients and care givers. They conduct free week end clinics, counseling, quarterly awareness programmes for care givers and general public and an annual programme both for medical and non medical persons, Epilepsy Management Training programme for Doctors. He mentioned that they are in the process of developing a short documentary film.
Orla Gilroy, General Secretary (Conveyed in absentia ) – To provide a contact of a person in their areas that they have worked with for translation of materials in their respective languages. Stigma remains a key challenge. She mentions that everyone can learn a great deal from India as there is a very proactive medical professional group.
Ms. Ann Little (IBE) while complimenting the various chapters for their activities suggested a combined regional activity in some form, may be a painting competition or some interactive programmes.
Meeting concluded with vote of thanks to the chair
Prepared by Dr HV Srinivas