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Yasho Wakankar's Story

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I was an Epileptic patient for last 23 years…
Yasho Wakankar Yasho Wakankar
I am the happiest person in the world now! Since the last one & half years I haven’t had an epileptic attack! This was possible because of the Neuro–surgery I went through in July 2003. I used to have 2 to 10 attacks a month. This surgery was done in Trivandrum, at ‘Sree Chitra Tirunal Institute of Medical Sciences’. Now my family, my friends and I are living a very happy life. The anxiety and suffering is finally over.

1st July 1980: I was 7 years old. That day I had my first Epileptic attack. I was unconscious for the whole day, I was suffering from left Temporal Lobe Epilepsy and since that day my attacks started increasing. At first I used to have 2–3 attacks a month, but day by day the attacks increased, and up to last year number of attacks per month settled on 5 to 10. There were so many restrictions on me. Swimming, driving, running was not possible for me. Above all it hampered my quality of life a great deal and every moment was an anxious moment.

Both my parents have very positive thinking nature. They never treated me differently or as a child with some illness. They brought up my sister and me in the same manner, but due to this illness I could not participate in any of the sports and outdoor activities. So my parents encouraged me to cultivate hobbies, which I could do at home. They started me on Indian classical music’s class, drawing and many other hobbies. For me, classical music turned out to be my meditation, which is still continuing. At first, drawing was a hobby, but eventually it became my profession. I became Commercial Artist.

My mother, Dr. Anita Awachat, was my mentor from my childhood. She was a perfectionist. She taught me how to take medicines on time, how to keep notes about the attacks etc. Her opinion was, tablets are our friends, we have to accept them happily, and we have to say while taking medicines that I will be all right because of these medicines! She taught me how to accept my illness and how to live positively with epilepsy. Epilepsy is not only a physical disease, it also depends on your mental strength as well. It is said to be a psychosomatic as well. Meditation helped me counter the disease from time to time. When I met Parag, my husband, we started doing Vipassana, a scientific technique of meditation.

My mother was affected by cancer in 1989. But she was not at all nervous or depressed. She was working hard till her last day before she got admitted even if she was a cancer patient. That was when I realized, my disease is nothing compared to Cancer. I was told, Epilepsy is not an emergency disease like cancer, so why should I cry. I just have to accept it.

Parag, my husband also thinks very positively, just as my parents. After our marriage he started to know & learn about epilepsy. He started to read, surf the net on this subject. He used to give information about this subject to me. My attacks were increasing day by day. Then one day my Neurologist, Dr. Pradeep Diwate told us about the possible Epilepsy surgery.

We were in Belgium on account of my husband’s job. During that 1 ½ year stay, my attacks became very erratic and finally the most dreaded thing happened. I burnt my hand to third degree. I got an attack while I was cooking. That is when we decided to finally take a chance at Epilepsy surgery. We came to India, took an appointment at Sree Chitra Tirunal Institute. After Video EEG, initial check–ups and diagnosis of one–week stay at Sree Chitra, Dr Radhakrishnan told us that I was a good feasible candidate for surgery. This gave us a ray of hope. It was a very important and critical decision and we had nothing to lose.

I was operated on 2nd July (my surgery was 495th epileptic surgery at Sree Chitra!). Operation lasted for about 8 hours. After a long wait, Doctors told Parag that operation was successful, but the anxiety didn’t go right away, because my family and i lived with epilepsy for 23 years. All the doctors and nurses at Sree Chitra are very dedicated, and caring team. After operation I kept myself occupied with origami, and reading to ignore the pain. My recovery was very fast, and I was discharged after 7 days. The first review at Sree Chitra after 3 months showed no signs of epileptic activity in my brain. This was sheer joy to us, this was simply too hard to believe & to good to be true. I am very grateful to the team at Sree Chitra, which includes all Doctors, Nurses and the Staff.

Now I want to share my joy. I always wanted to reach out to people (this I possibly inherited from my parents), and hence decided that whatever the disease & a successful surgery has taught me and the manner in which I seem to have conquered it, should be passed on to as many epileptic patients as possible.

This has given rise to an idea of forming a support group for epileptic patients and their families. I started to meet epileptic patients and their families and many Neurologists in Pune. I told them about my operation and shared the idea of support group with them etc. I learnt about a very active epilepsy support group, “Samman” in Mumbai. I started to attend the support group in Mumbai. When I saw confidence in epileptic patients, I felt very glad! Yet there is a need to bring about more awareness in the society. An epileptic can lead a normal life, live happily while fighting with the disease.

Neurologists in Pune are very co–operative. Some of them have started to send their patients to me to counsel & convince them for the Epilepsy surgery. When people look at me as an example of successful operation, they happily get ready for the operation! My support group is supposedly starting next month. Who so ever is interested, or know any epileptic patient, please do call me on my cell phone: +91 9822008035 or pass on this message to them. I will be more than happy to be of help

It is just a beginning of new life…
Contact:
Sanvedana Foundation:
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Indian Epilepsy Association

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Indian Epilepsy Association Bombay Chapter
E–Cell
The Indian Epilepsy Association (IEA) was registered in December 1971 as a Public Charity Trust with a mission to raise epilepsy awareness, increase acceptance of persons with epilepsy and provide relief and rehabilitation to patients and their families. It started with 16 chapters, Bombay being one of them, and today we have 22 chapters all over India with a total membership of 1597. The office bearers of the Bombay Chapter are:

President: Dr. B.S. Singhal, Vice Presidents: Dr. Arun D. Bhatt, Carol D’Souza, Kavita Shanbhag, Hon. Secretary: Dr. Pravina U. Shah, Jt. Secretaries: Dr. Sangeeta H. Ravat, Dr. Urvashi R. Shah.

The activities of the Bombay Chapter can be classified as follows:

Patient &
Family Welfare
Education & Awareness Training/Work–
Shops/Conferences
Information Material
  • Support Group
  • Yoga
  • Counselling
  • Special Education
  • Sheltered Work
  • Special Programs
  • Medicine Subsidy
  • Excursions
  • Entertainment
  • At Schools
    1. Epilepsy education
    2. Epilepsy Quiz
    3. Essay competitions
    4. Poster competitions
  • At Public Places
    1. Malls
    2. Promenades
    3. Railway stations
    4. Hotels
  • For Educators/Para Professionals
    1. Epilepsy Educator workshop
    2. Comprehensive Epilepsy Care
  • For Patients
    1. Early Intervention
    2. Life Skill Training
    3. Cultural Programs
  • Conferences
    1. National
    2. International
  • Newsletter
  • Films
  • Epilepsy Facts booklet
  • Pocket Calendar Cards
  • Conquering Epilepsy book
  • Patient & Family Welfare at our Center ‘E–Cell’
    Support Group ‘Samman’: Loneliness or lack of companionship is a major problem for people with epilepsy. Our support group meetings give our members an opportunity to make friends and learn from each other how to cope with the disorder. Professionals are also invited to attend meetings to interact with our members and educate them on various aspects involving their health care. Every 2nd and 4th Saturday we have support group meetings from 2:30 to 4:30. 5th Saturday, if there is one, is reserved for an excursion.


    Yoga helps in a large way to alleviate the stress felt by people with epilepsy and their family members. Every 1st and 3rd Saturday we have yoga classes.
    Medicine Subsidy: For 30% of people, epilepsy becomes chronic. The high cost of medication, which needs to be taken life long, and investigations increases their financial burden. We therefore offer at E–Cell, anti–epileptic medications at a reduced rate.
    Counseling: The unpredictability of seizures leads to overprotection of people with epilepsy. This consequently leads to a lot of behavioural problems which is taken care of through individual, family and group counseling at E–Cell with prior appointment.

    Special Education: Children with epilepsy having difficulties are helped to improve their studying methods through special education. The special educator also trains family members to use innovative methods to train their children – This service is rendered at E–Cell with prior appointment.

    Sheltered Work: We obtain orders for sheltered work in order to provide an opportunity for people with epilepsy who are normally kept at home learn, earn and socialize with others.

    Cultural Programmes: The need to build confidence amongst people with epilepsy was felt and this has been achieved, among other things, by training our members to take part in various cultural programmes: dance, drama, skits. On National Epilepsy Day our members perform before large audiences. Skits have also been performed at national and international epilepsy conferences and public forums.

    Special Programs/Workshops: Once or twice a year, during the holidays, we hold a workshop. Successful workshops we have had include the E–Camp: 4 day in–house personality development workshop, Epilepsy Phone–in–Program where eminent neurologist answered questions from patients and others about epilepsy, E–Remedial Programme which focused on proper child development and behaviour remediation, ‘Umang’ – one week dance and drama workshop and workshops on ‘Epilepsy & Employment’ and ‘Epilepsy & Marriage’.

    Entertainment: We also celebrate Religious festivals such as Diwali and Christmas and once a year have a puja and a picnic.
  • Awareness
    Due to the stigma associated with epilepsy, there is a strong need to educate people about the disorder. As young minds are more open to new ideas, most of our awareness programmes take place in schools. The child with epilepsy also needs to be nurtured in a supportive environment to maximize his/her potential. These programmes besides educating children and teachers about epilepsy also serve to make known our organization and the services we provide.

    Education helps increase acceptance of people with epilepsy which needs to take place at all levels, not only at schools, but also in the neighbourhood, and very importantly at the time of employment and marriage where stigma is greatest.
  • Training/Workshops/Conferences
    For paramedicals and those working with people with epilepsy
    As epilepsy education is an ongoing process and the need to educate is large, it is important that we have workshops to train the trainers. So far we have had two such workshops : The Epilepsy Educators Workshop in 1998 and Comprehensive Epilepsy Care in 2002.

    Early Intervention & Life Skill Training Programmes: Approximately 25–30% of people with epilepsy do not have their seizures under control and this hampers their education and coping skills. Worldwide it is acknowledged that the earlier the intervention the better the prognosis. Our early intervention programme, which started in 2004–2005 revealed that children who had cognitive or learning difficulties attending mainstream school needed one–on–one remedial education which we offered on Saturdays. Those who were homebound due to uncontrolled epilepsy were taken on a daily basis and taught functional literacy and socially acceptable behaviour. The main factor that hampered the progress of this program was the long commuting distance for the participants and their caregivers. We have now started a Life Skill Training programme in 2006 to cater to the needs of the teen–adult age group. Conferences: Participating at conferences gives our members an opportunity to interact with other people with epilepsy living in different cities/countries and learn more about the disorder and how to cope with it.
  • Information Material
    Newsletter: We publish a quarterly newsletter ‘Epilepsy Care’ (started on Oct–Dec ’05) which is distributed to doctors and patients all over Maharashtra. For 3 years prior to that we published ‘Epilepsy India’ the national newsletter of the IEA. Pocket Calendar Cards giving basic information about epilepsy and our services has been printed in large numbers and is distributed at all our awareness programmes.

    Films: We have made 5 films so far, our latest one ‘Samman’ is used at our school awareness programmes.
    Epilepsy Facts booklet: This has been authored by Dr. Pravina Shah and is available in English and Hindi.
    Conquering Epilepsy: this book is a compilation of life stories of people with epilepsy, which has been edited by Carol D’Souza.
You can support our activities by:
  • Becoming a member of the Indian Epilepsy Association. Life membership Rs.1000/–. Yearly Rs.100/–. Membership forms available at the E–Cell Tel: 65057751/23850563.
  • Donations in favour of the ‘Indian Epilepsy Association, Bombay Chapter’. (All donations are exempt under section 80G of the Income Tax Act 1961).
  • Sponsoring medications.
  • Volunteering.
  • All the activities above have been made possible with the help of donations from various philanthropists. Services are offered to members free of cost.

    Websites: ‘Indianepilepsyassociation.org’, ‘Ieasamman.org’

    E–Vision
    • To increase the affordability of epilepsy medication on a large scale.
    • To reduce the stigma of epilepsy so that each person who deserves a job is able to get one and people of marriageable age are able to get married.
    • To increase independence and self sufficiency of all people with epilepsy.
    • To raise the quality of life of people with epilepsy and their families.
    For up–to–date information on our activities & events log on to ‘ecellin.wordpress.com

Mumbai Support Groups for Epilepsy

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ChildRaise
Committed to the Welfare of a Special Child
Contact: Kavita Shanbhag
Telephone: +91 22 24377457
Time: Monday–Saturday 1 p.m. to 5 p.m., Sunday 10 a.m. to 12 p.m.
Website: www.childraise.com

Samman
Epilepsy Support Group of Indian Epilepsy Association – Bombay Chapter
E–Cell
J.S.S. Municipal School, 2nd floor, Nana Chowk
Next to Shetty’s Restaurant, Grant Road(w)
Mumbai 400 007, Maharashtra, India.
Telephone: +91 22 23858563
Time: Monday–Satutday 2 p.m. to 6 p.m. and Sunday: 10 a.m. to 12 p.m.

E-Cell Epilepsy Information Centre
J.S. Municipal School, Nana Chowk, Grant Road(W)
Mumbai 400 007, Maharashtra, India.
Contact: Manisha and Alpana
Telephone: +91 22 23850563

Myths Surrounding Epilepsy

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Sometimes having epilepsy is not as difficult as facing the problems associated with the stigma of epilepsy. Some common misconceptions about epilepsy include:
  • Only kids get epilepsy. Although epilepsy is more common in children and young adults, epilepsy happens quite often to adults. People with a history of stroke, heart disease, or Alzheimer’s disease are more prone to develop late onset epilepsy.
  • Epilepsy is contagious. Epilepsy cannot be "Caught" from being in contact with a person with epilepsy.
  • People with epilepsy cannot/should not be employed. People with epilepsy are employed and successful in all types of professions. Even today people with epilepsy often do not discuss their medical disorder with coworkers for fear of being ostracized.
  • People with epilepsy are physically limited in what they can do. In most cases epilepsy is not a barrier to physical achievement. An excellent case example is South African cricketer Jonty Rhodes who has overcome epilepsy to emerge as on of the fittest & finest players of the game in the world today. In some circumstances, when seizures are not being well controlled, persons with epilepsy may be advised to refrain from certain activities like driving an automobile.
  • You should force something into the mouth of someone having a seizure so that they do not swallow their tongue. It is impossible to swallow your tongue. However, a cloth may be placed between the teeth to prevent tongue biting.
  • Epilepsy is no longer a problem since there are medications to treat it. Unfortunately treatment does not prevent seizures for everyone. Researchers continue to look for new ways to combat this disorder.
  • You can’t die from epilepsy. Epilepsy can become a life threatening medical condition when seizures cannot be stopped (a condition termed status epileptics).

Questions to Ask a Doctor about Epilepsy

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Doctor/patient Discussion Points
If they’re diagnosed with epilepsy, one of the first thing we want to know is, what was the cause and what are the remedies and the chances of recurrence. When you have questions about epilepsy, write them down on a list as you think of them and ask your doctor. Use your doctor as a clearinghouse for information and support groups.

Good medical care is based on a partnership between the doctor and the patient. Always tell your doctor about any reaction to the medication or, if the treatment isn’t working. Let the doctor know what is important to you and what concerns you have. It’s important for the doctor to know about any “Black–outs”, spells, auras or small seizures that you have experienced. Most patients with epilepsy see a neurologist for their epilepsy. Sometimes, the relationship between patient and doctor doesn’t “Click”, or the patient likes the doctor but their seizures remain uncontrolled. A change of doctor or a second opinion are reasonable options open to you as a patient. Epilepsy can be an agonizing condition to live through, and without a doctor you have complete trust in, the condition can become almost unbearable.
Some of the questions to ask your doctor:
  • Could brain surgery be effective in stopping my seizures?
  • Can medication prevent seizures?
  • What would the side–effects be?
  • What is sodium valproate?
  • What is the difference between Lamotrigine and Carbamazepine?
  • What other medication can be used?
  • What about contraception pills?
  • Can I take other drugs while taking medicine for epilepsy?
  • What if I become pregnant whilst taking medication for seizures?

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