Thursday, March 5, 2015

Stop the Epilepsy Stigma!

These days if one would to take a stroll in shopping malls, you almost cannot miss out on high end outlets carrying labels like Zara, Burberry, Louis Vutton, and other branded names that you can think of. To me, these outlets are the ones that are nice to look at from the exterior; those "See, no touch" and "See, no buy" kinda thing. Having said so, I must admit that it is still nice to have a second glimpse at these exclusive outlets.

As a person with epilepsy, the topic of labels never fail to trigger a sore spot in me. I have lived through different phases of my life where I was being labelled as indifferent, weird, totally dependent and abnormal. And I am certain a lot of PWE would have experienced my same problems at some points in their lives. This should never have happened if not because of centuries old stigma. To stigmatize and being stigmatized, this derogatory process has got to stop.

Stigmatized is defined as "If you stigmatize someone, you have given that person a label — and it's usually a label that is limiting in some way.

In Ancient Greece, a stigma was a brand burned into a slave or a criminal's skin to symbolize disgrace. In the 1500s, the word stigmatize meant literally "to brand or tattoo." Nowadays, to stigmatize is to shame or brand a person in a more symbolic way."

If living and coping with epilepsy is not enough, PWEs are frequently challenged and confronted with problems arising from stigma like low self esteem, self rejection and self blame to name a few. To make matters worse, there are also issues like driving, employment, marriage, pregnancy and friendship to look into.

One ought to be extremely thankful if he or she does not have to live with epilepsy. But does that mean that he or she has the right to discriminate those of us who have epilepsy? Do not be quick to judge, criticize or stigmatize others when you are not walking a mile in their shoes. You can help by being more considerate and understanding towards others especially when you have no knowledge about their condition. What more, if their condition is a hidden condition like epilepsy.


The Importance of Keeping a Seizure Diary

Special Issue of the International Epilepsy News Magazine

This is Shenaz Haveliwala of India. Shenaz together with Robert Wierzbicki of Australia and I were recipients of "Outstanding Award for Person with Epilepsy" at the 10th AOEC (Asian & Oceanian Epilepsy Congress) held in Singapore last August.

In celebrating the 1st International Epilepsy Day, a Special Issue of the International Epilepsy News Magazine has been released for public reading.

To both the presidents of IBE and ILAE and everyone who had contributed and played an integral part towards the successful launching of the 1st International Epilepsy Day, I would like to extend my heartiest congratulations and thanks to all of you for having done a magnificent job to achieve this significant Day.

The Good News

On the launching day of the International Epilepsy Day which was on Monday, 9th February, scores of exciting things like #epilepsyday tweets, #epilepsyday selfies, media articles on epilepsy and epilepsy stories circulated non stop globally throughout the Day.

Last evening, my advocate friend from UK, Guy W. Stoker sent me a piece of good news regarding an article on the 1st International Epilepsy Day.

This was the good news.

Another Special Day to Look Forward To!

This is a post that I wrote more than a week ago about the 1st International Epilepsy Day. I did not post it until now which is the actual date of the International Epilepsy Day.

Happy reading.

"Birthday is an occasion where nobody ever wants to miss. Most, if not all of us look forward with much excitement to this particular day called "Birthday" in every calendar year. Whether it is a small or big celebration, we all love to celebrate our birthdays to remember that special day when we were born into the world.

My birthday for this year has passed but then there is another eventful day coming up on the way which is to me just as meaningful and even more exciting than my birthday. For the last three weeks, I have been crossing out the daily dates on my table calendar towards 9th February 2015.

The 9th of February 2015 is going to be a very significant and memorable day for epilepsy societies, people with epilepsy and also their caregivers all around the world. On this day the first International Epilepsy Day will be celebrated concurrently by 138 countries in which The International Bureau for Epilepsy (IBE) and The International League Against Epilepsy (ILAE) are being represented. With IBE and ILAE in official working relations with the WHO, and with IBE in Special Consultative Status in the Economic and Social Council (ECOSOC) of the United Nations, this makes International Epilepsy Day to be the most prestigious epilepsy event in the world.

The first International Epilepsy Day is on Monday, 9th of February 2015. Following on from this, the official day will be on the second Monday of February each year. This world day for epilepsy will be a major step in improving epilepsy awareness in every region of the world, and also highlight the urgent need for increased research into epilepsy.

With such a prominent day in the line up, I certainly won't want to miss this day or let it pass by uneventfully. I have done my early homework by submitting an epilepsy article to a local news media. If all goes as planned, my article should appear in the media on the 9th of February.

These days, a scroll in my Facebook shows so many epilepsy societies and epilepsy advocates like me, posting about their epilepsy activities and events that are meant to coincide with the first International Epilepsy Day. Viewing and reading the endless posts about epilepsy awareness and researches has widened my knowledge of epilepsy tremendously and I am very thankful about it.

For the last 13 over years as a person with epilepsy and an epilepsy advocate, I noticed a lot of advancement has been made in the areas of epilepsy awareness and research breakthroughs. Needless to say, this will continue to progress rapidly in the decades to come and it is my fervent hope that one day a cure will be found for epilepsy.

Once again, my sincerest and heartfelt thanks to IBE and ILAE for creating this momentous day - International Epilepsy Day."

My Painting for International Epilepsy Day

Happy International Epilepsy Day !

#epilepsyday in Malaysia !

Taking Epilepsy Seriously

An Epilepsy Milestone!

A historic achievement for epilepsy happened yesterday. World Health Organization (WHO/OMS) endorses agenda item on epilepsy. Congratulations to IBE and ILAE for achieving this milestone.

International Epilepsy Day (9th of February)


This is the first study to show that PHENYTOIN, an anti-epilepsy drug reduces both the growth and speed of breast cancer tumor cells.

Fingers Twitching


Last week I posted an article about epilepsy and aura. It was interesting to note the comments left by some of our members.

Ejard and Peng Kwee shared that they experienced hearing difficulty prior to their seizures. Billy had twitching in his elbows or cramps in his fingers warning him of potential seizures. Shanthi's brother also had twitching in his fingers. Occasionally his eyes turned very red and looked tired out before a seizure.
In my entire lifetime of seizures I had only on two occasions felt some indifferent sensation in my head prior to my seizures. I felt dizzy and light headed.

For many auras are easily recognizable and for some it can take a long while for their auras to be recognized. Some auras are accurate indicators of seizures and some are not.

Below are some common types of aura before a seizure.
Déjà vu (a feeling of being there before but never have).
Racing and confusing thoughts.
Visual loss/blurring
“Strange” feelings
Pleasant feelings
Dizzy or lightheaded
Odd sounds
Nausea or other stomach feelings.
Numbness or tingling in part of the body
Jamais vu (a feeling that something is very familiar but it isn’t).

Epilepsy and Aura

Epilepsy and Aura

Even though I knew my wish would be for the impossible I still wished for it during last Christmas - all I wanted for Christmas was a cure for my epilepsy. Then came New Year and again I made the same wish.
I believe my wish is also the wish of every person with epilepsy. While a small percentage of people with epilepsy live to share their success stories of how surgeries had rendered them being permanently seizure free, a big portion of us are dependent on medications to offer us good control of our seizures.

Whilst wishing for a cure is being unrealistic in my case, my next immediate wish is to be blessed with some kind of aura for my seizures and I know Shanthi Ballu and Jacqueline Lim's brothers would also wish for the same. Mohd Shafizal shared that each time he had an aura he would cancel his job appointments which required him to drive. His freelance job gave him the opportunity to rest at home whenever he had an aura.

Except on two occasions my generalized seizures always strike me without any aura warning me before hand. Cuts, bruises, bleeding, cracked jaw bone, broken teeth and swollen lumps are some common injuries I have experienced. Kim Chin shared with us about some of her brother's injuries. Her brother's facial features and head have been badly injured as a result of his uncontrolled seizures and he is wearing a protection head gear to prevent further head and facial injuries.

A Cantonese saying goes like "No fish, shrimps are just as good." For people with epilepsy the saying probably goes like "No cure, auras are just as good." Auras give us the benefit of settling down in a safe place/position before a seizure takes place and in that way a lot of injuries would be prevented.

To know more about epilepsy and aura visit this link

Can a person with epilepsy drive?

Can a person with epilepsy drive?

Driving poses daily challenges for many people with epilepsy. Driving a car is critical to employment, socialization, and self esteem.

As a person with epilepsy I have frequent thoughts of wanting to jump behind a steering wheel and drive myself to wherever I like. The feeling of being able to drive is both luring and elusive.

If only I could drive then I wouldn't have to depend on others, but what if a seizure happens and as a result I get killed or I kill someone else instead? This coupled with other thoughts are enough to quash all my hopes of being able to drive one day. I know my own limitation. One obvious reason that will rule me out as a driver is I still experience seizures despite achieving some good seizure free months periodically.

So, can a person with epilepsy drive? In my case it is no but in many cases it is yes. A check with PEM's president indicated that there are some general driving guidelines for people with epilepsy in our country. As of to date there aren't any specific legislation set to that effect yet.

For a general idea on who are allowed to drive, read more at:

Thanks for being a part of my Great Epilepsy Awareness Year!

Sunday, March 1, 2015

At The Multiple Sclerosis Society of Malaysia's Family Day (2014)

My Voice for People With Epilepsy

My Epilepsy Acronym

Annual Walk-A-Thon

IE News: Issue 2 -2014 (International Bureau for Epilepsy)

International Bureau for Epilepsy, IBE

65 Million People Have Epilepsy

Receiving My Outstanding Award for Persons With Epilepsy at the 10th AOEC, Singapore

With my Husband & Two Dotting Sisters at the 10th AOEC, Singapore

At the 10th AOEC Epilepsy Symposium, Singapore

With Japanese, Korea & Malaysia delegates at the 10th AOEC, Singapore

Prof Jim Chambliss with other important guests at the Epilepsy Book Launching, Melbourne

With My Artist Friends at the Book Lauching in Melbourne University

My Epilepsy Statement and Painting

My Migraine and Epilepsy Painting Made It Into This Book

Myself with Other Artists at Epliepsy Book Launching in Melbourne

Undiagnosed Epilepsy Made People Think I Was Acting Out (Epliepsy Ontario)

Posted: Updated:

Undiagnosed Epilepsy Made People Think I Was Acting Out

It starts with the sensation of a light switch being pulled violently behind my eyes. I lose cognitive control quickly. I can't focus on even a simple task, and I forget what I'm doing while I'm in the middle of doing it. I could pick up a pen, then forget why I'm holding it. As the weight behind my eyes intensifies, my eyes roll into my head and start to flutter so rapidly it feels like they are going to pop out. This can last for a split second, a few hours, a few days, or a week.

I have epilepsy, a neurological disorder characterized by recurring, unprovoked seizures. The episodes I described are seizures -- they are simply misfiring neurons. Sometimes, these seizures are affected by the season. Other times, they are more easily triggered by stress.

I had my first Tonic-Clonic Seizure in December 1996, my Grade Six year. I fell unconscious into a snow bank in the parking lot of my elementary school. Many people are more familiar with this seizure's older name, Grand Mal.

I was diagnosed with Generalized Seizures that same year. This news left my family and teachers confused. I had never shown any signs of what they thought of as epilepsy, the violent shaking on the ground portrayed in movies and on TV. No one realized I had been having seizures for many years. Instead, they misread my childhood behaviour as misbehaving.

I frequently blacked out for split seconds in elementary school. The blackouts were likely Absence Seizures, a type of seizure that looks like daydreaming. Even though the black-outs happened on a regular basis, they were almost impossible to spot with an untrained eye.

In a Grade Three art class I blacked out and knocked over a cup of water that contained a few paint brushes. At the time, no one realized it was a Partial Seizure. When I came to, my teacher asked me why I had done that. She told me it was a disturbance to the class and I needed to watch my behaviour.

I had never even heard the word "seizure" before the age of 11. Without a reference point, these incidents in school seemed normal to me. As far as I was concerned, I didn't have seizures; I just needed to control my behaviour so I would stop getting in trouble at school.

There was no information about raising a child with Generalized Seizures available to families living with epilepsy in the late-'90s. My family and my teachers didn't know anyone with epilepsy who could help them figure it out. There were no community epilepsy agencies in our area at the time. Without available resources, we felt left in the dark.

Without a clear understanding of epilepsy as I grew up, it became difficult for me to talk about it with others in my life. As a young adult, I would often avoid discussing it with boyfriends, new employers, and new friends.

Globally, one in 100 people are diagnosed with epilepsy. It is one of the most common neurological conditions worldwide, yet public knowledge is extremely limited. Many people with epilepsy never talk publicly about their diagnosis fearing discrimination. Seizures and seizure first aid on television is often inaccurate. Myths and misconceptions about epilepsy persist.

This monthly Epilepsy Ontario column will provide insight into what it's like to live with epilepsy and fill that information gap. Each month, we'll feature guest columnists including neuroscientists, community support workers, advocates, and people living with epilepsy. These experts will challenge myths and misinformation about epilepsy, sharing personal stories and research.

Interest in epilepsy is growing. In 2010, the Government of Ontario announced $15 million over three years in start-up funding for the Ontario Brain Institute. In 2013, they renewed their commitment with an additional $100 million over five years. In 2012, the Canadian Government officially proclaimed March 26 Purple Day, an international day for epilepsy awareness. That same summer, Health Quality Ontario published a report declaring that epilepsy care in Ontario "varies from being non-existent to fragmented" and urged the government to fund a provincial epilepsy strategy.

The Ontario Government responded to the report by forming the Epilepsy Implementation Task Force. Globally, there is an increase in funding for brain research and brain mapping initiatives. These investments could dramatically change what we know about, and how we talk about, epilepsy.

Lack of information dramatically impacted my childhood and the way my family dealt with my diagnosis. It also caused me to feel that I was somehow personally responsible for my seizures. That was then -- no more.

We feel privileged to have this opportunity to contribute to growing epilepsy awareness on the world stage. Our column will provide a foundation of knowledge and offer a common language for the public discussion about epilepsy. Through this column, we call on you to join us in our campaign to raise global epilepsy awareness.

By: Gena Meldazy, Communications Manager at InteraXon

Seize The Day - Beyond Barriers (The Star Online)

Published: Thursday January 16, 2014 MYT 12:00:00 AM
Updated: Tuesday February 3, 2015 MYT 8:04:51 PM

Dear Readers,

I am still maintaining this blog. All posts will be transferred from Facebook into my blog over a course of time.

Stay tuned and thank you!

Serene Low