Journeying with Epilepsy, the story of a mother

I’m Nichole Vanderpool, President and Founder of the Seizure Awareness Foundation of Trinidad and Tobago. My journey with Epilepsy began on October 13th 2006 at approximately 1:30am when my six-year-old son Ezekiel, who was asleep at the time, was having a seizure or, as we call it in our vernacular, “a fit”. A seizure is a brief change in the normal electrical activity of the brain that usually lasts anywhere from a few seconds to a few minutes. Depending on the part of the brain that is affected, seizures can be as inconspicuous as a stare blankly or a violent convulsion. This seizure made my son’s entire body convulse violently and his eyes roll back. What seemed like an eternity was just about 60 seconds. My reaction? Total hysteria! Of course, my family members and I did everything wrong, which included trying to put something in his mouth and holding him down.

We immediately rushed him to the Wendy Fitzwilliam Paediatric Hospital, Mt Hope where we explained to the attending physician what we had witnessed. The diagnosis of Epilepsy didn’t come until the second seizure. 

Epilepsy is a neurological condition that causes a person to have a seizure. A person who has two or more separate unprovoked seizures, more than 24 hours apart, is usually given a diagnosis of Epilepsy. From this point on, our lives changed. 

In the days that followed, Ezekiel was put on Anti-Epileptic Drugs (AED’s) and I literally watched him sleep. Obviously, I could not continue being the night watchman forever. So being a devout Christian, I did the only thing I knew how to do, pray and have faith in God that he would handle this situation as well. 

A diagnosis of Epilepsy can be very daunting; it signals the beginning of a medical, psychological and emotional road for both parent and child, patient and loved ones. As a mother, feelings of helplessness, hopelessness and guilt step in. I constantly asked myself questions like: Is this my fault? Did I do something wrong? How can I fix this?

I took Ezekiel to the clinic as was suggested by the doctors. I was determined to find out everything I could about Epilepsy. I questioned most of the parents I met whose children were also battling the same giant; after all, I thought that since they were dealing with this disorder longer than I have, certainly they would be able to enlighten me. Sadly, not much information was available from the parents or my short time in with the doctor. In a desperate search for answers, I searched different sites on the Internet for information and ultimately discovered that there was a whole world out there with millions of people with Epilepsy. It may surprise you to know that epilepsy affects over 50 Million people worldwide. There are approximately 40,000 people living with Epilepsy right here in Trinidad and Tobago and two million new cases occur every year in the world (PAHO 2015). Why was there so little information available? It’s so prevalent yet why isn’t it talked about more? I was resolved to do something to help break that silence.

In 2014, I founded the Seizure Awareness Foundation of Trinidad and Tobago (SAFTT) together with a few like-minded colleagues. The SAFTT is a non-profit organisation established to educate, empower, encourage and advocate on behalf of persons living with Epilepsy. It also aims to raise awareness of the disorder through our “Seizure Smart” lecture tours and through public outreach and social media.

Together with my team, and our medical consultants, both local and foreign, SAFTT is committed to creating “Seizure Smart” schools, organisations, communities and generally a “Seizure Smart” Trinidad and Tobago.

A Seizure Smart environment is one where people understand Epilepsy, and seizures in general, and puts in place inclusive practices to support persons with Epilepsy in achieving their full potential and developing positive social relationships. It also ensures that persons are knowledgeable of seizure first aid and are in a position to render support. Thus far, the SAFTT has been afforded the opportunity to take our Seizure Smart Tour to seven schools where students or staff members are affected by Epilepsy. We have also done lectures at a few churches and organisations. The SAFTT has collaborated with the Ministry of Health and other similar organisations to commemorate Epilepsy Awareness Day and in 2019, we successfully hosted our first Epilepsy Symposium for carers of persons living with Epilepsy. 

The work of the SAFTT and other advocacy groups is never done. Each year we dutifully acknowledge these specific commemorative dates:  March 26th is Epilepsy Awareness Day and November is Epilepsy Awareness Month. While we continue advocacy and public education efforts throughout the entire year, these dates provide a wider platform as a global microscope is placed on the issue on these particular days. Through fund-raisers and programmes, outreach activities and by wearing purple (the international colour of Epilepsy Awareness), advocates dispel myths and promote understanding of Epilepsy.

In this vein, I would like to use this space to enlighten our readers about how to respond when someone has a seizure. Please use the graphic as a guide when rendering assistance. 

The WE Team

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1 Comment
  1. My son is mentally challenge at the of 15 years he started getting seizures.He’s on medication side effect is showing up he was hospitalized for two weeks in April, I’m so glad seeing this am not a young person and it is very hard on me.I’m 82 years I will be very thankful if u can help.

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