Thursday, October 29, 2009


This is a very rare form of childhood epilepsy. Out of 500 children with epilepsy, only one, or at most two, children are likely to have this form of epilepsy. It is also called Dravet Syndrome. The epilepsy starts with seizures which may not initially differ from those associated with feverish illnesses (febrile convulsions).

Generally, this syndrome tends to develop during the second year of life. It may not be possible to make this diagnosis until the child is two, three or even four years old. The seizures begin in the first year of life. They are most often associated with high temperatures and often just involve one side of the body, although both sides of the body may be involved.

The seizures are characterised by jerking rather than stiffness and jerking. They often recur quite frequently in the first year of life. However, at this time it is not easy to differentiate these children from others with febrile convulsions who get better and who do not go on to develop other types of seizure.

During the second year of life of children with SMEI, seizures become more frequent and persistent, are often more obviously partial (involving one part of the body) and no longer occur when a child has a high temperature but at any time of day and night.

In addition to the partial seizures, myoclonic jerks (‘myo’ meaning muscle, and ‘clonus’ meaning jerk) become prominent. Often the children are photosensitive (have seizures brought on by flashing lights). Seizures may also sometimes be brought on by hot environments or hot showers or baths.

The early development of affected children is usually normal but once the myoclonic seizures and partial seizures start in their second year of life, children may lose skills or their developmental progress may slow down. The child’s speech and language maybe particularly affected.

For more information on Dravet Syndrome please visit


Sunday, October 25, 2009


A Particular Blend Of Love For People With Epilepsy (PWE)

4 cups flour
1/2 cup full of Love
25gm Kindness and Forgiveness
25gm Bliss seeds
2 tbsp Gentle powder
100gm Togetherness
Lovey-dovey oil
Joy butter, sugar and salt

Sift flour. Add water. Mix it together. Add tenderness and set aside for a lifetime. Mix Love with Kindness and Forgiveness. For stronger ties and connections, add Bliss seeds, Gentle powder and a dollop of Togetherness. Add kisses to mixture and knead into firm dough. Allow dough to sit for years and years.

Sprinkle crushed Joy butter, sugar and salt for added Togetherness. Grease baking pan. Mold dough into shapes of your heart. Bake epilepsy munchies in oven till crunchy and aromatic.

Serve epilepsy munchies throughout generations. Whoever eats it will forever remember what epilepsy is all about.


Monday, October 12, 2009


About three over years ago, my late dad was in a critical condition in a private hospital. Doctors informed us that our dad had vomited excessive blood due to a nasty ulcer in his stomach. We were told to return seven (1.5litre) packets of blood to replenish the hospital's blood bank. The doctors had intended to transfuse seven packets of blood into my dad's body to sustain his life.

My siblings and I had blood tests done immediately to determine if all of us can donate blood. Most unfortunately, I was unable to donate blood. The lab medical officer told me that epileptics' blood are not acceptable by hospitals because of fears that epileptics' blood might contain traces and elements of anti convulsant drugs' effects like phenobarbital, epilim, tegretol, keppra, etc. There are worries that recipients of blood donated by epileptics might react to the side effects of anti convulsant drugs.

In this article I do not intend to elaborate in great length on medical issues surrounding blood donated by epileptics. I only wanted to highlight the emotions or rantings of an epileptic, that is, myself.

I was devastated to find out I was not allowed to donate blood for my dad's survival chances. In such a life and death situation involving my loved one, it was most nerve wreaking, upsetting and frustrating for me to be deprived from donating blood. If only I had not revealed on the blood test form that I am epileptic. Maybe in future, I will not attempt to reveal my epileptic condition when I wish to join in my church's annual blood donation day. Or maybe I will not.....Ohhhhhh!!! Epilepsy makes my blood worthless cos it is tainted and contaminated beyond any good use for other people.

To those who are able to donate blood, be grateful and donate whenever possible to save lives. I will never ever have the chance to donate blood as much as I would like to. I feel so lousy.


Monday, October 5, 2009

Heather Siebens - Epilepsy Activist (Chandler, USA)

I have met SOOOO many amazing people on twitter...naming just a few on here to start...we all need to connect more--talk more out. And get others who aren't--connected!! Amazing blog humbled me big today--Jesus works wonders in all circumstances.

Hi All,

Meet my famous and untiring epilepsy activist friend, Heather Siebens (Hetty) from USA. I got to know Hetty from Twitter. Meeting and communicating with Hetty was one of the happiest things that unfolded to me recently.

Hetty is a lively, bubbly, positive minded person with epilepsy. If you care to view more of Hetty's YouTube videos you will find out from her the various illnesses she is going through in her life. She does not complain about her illnesses but instead advices people to face and accept their illnesses courageously. Adversities are part of everyone's lives.

Hetty not only copes with her own epilepsy condition but she also serves as a great and loving caregiver to her daughter who also has epilepsy. There are chain reactions in life. I am most uplifted by Hetty's constant active participation and contribution towards promoting epilepsy awareness. Likewise, I hope I have been a good source of inspiration to others. And for the people who have been inspired by Hetty and me, I hope you all will on your part be equally uplifting to some more other people.

In a highly stigmatized society that we live in, let us work as an unbreakable united force to eradicate or reduce wrong myths and misconceptions about epilepsy.


(Hetty can be connected in Twitter @EpilepsyCures or @AliveinMe or you can visit her at

Acknowledgement : Thank you very much Hetty for mentioning me in this YouTube video of yours.