Ezekiel Ifill had his first seizure when he was just six years old and has been living with epilepsy for the past 13 years.
Asked if he believed having epilepsy has hampered him from having what is traditionally considered to be a normal life, he said: “It doesn’t hold me back from anything in life you know.”
But he has to take extra caution in doing normal activities to prevent injury. He is not allowed to drive and requires supervision.
Ifill, 19, was among was several people who have been diagnosed with epilepsy to visit the Ministry of Health’s Epilepsy and Health Fair, on the Brian Lara Promenade, in Port-of-Spain as it commemorated World Epilepsy Day for the first time.
He said he could sometimes feel when a seizure is about to happen so he takes a seat and prays.
Ifill’s mother, Nichole Vanderpool recalled his first seizure.
“We were sleeping, it was 1 am and the bed was shaking. At that time he was sleeping with my mom and she woke me up and said Nichole look what’s happening. I did everything we tell people not to do. I panicked, ran up and down but I did grab him and go to the Mt Hope emergency hospital,” she recalled.
Ifill was not diagnosed with epilepsy, as, at the time, it was a one-off occurrence. However, after his second seizure two weeks later, they were sent to perform an electroencephalogram (EEG), which Vanderpool explained “is a test to measure the electrical impulses in your brain to determine if there are any abnormalities.”
Following his diagnosis, Vanderpool went on to form the Seizure Awareness Foundation of Trinidad and Tobago (SAFATT).
“I always thought I should do something, nobody knows anything about epilepsy. Everything I knew was either I asked the doctor or other parents who might be knowledgeable…I always say you or your child’s best advocate. You know this child better than anybody else. So I toyed with the idea for a while and in 2014, we incorporated the SAFATT by the Ministry of Legal Affairs and we’re actually a registered NGO,” she said.
The organisation exists to, educate, empower, encourage and advocate on behalf of people living with epilepsy.
Representative visits schools and other organisations and conduct public awareness campaigns on how to treat someone having a seizure.
Pan American Health Organisation (PAHO) country representative for T&T and the Dutch Kingdom Islands, Dr Erica Wheeler estimates that there are some 40,000 people living with the condition in the country.
She also revealed that there is a high number of people living with the condition that is untreated in the Caribbean region.
“It is estimated that the treatment gap in Latin America and the Caribbean is shockingly over 50 per cent which means that half of the people with this disease do not receive health services,” she said.
She added that 70 per cent of those living with the condition could be treated with medication with a primary health care approach.
Health Minister Terrence Deyalsingh said the event was being held to raise awareness of epilepsy.
According to the World Health Organisation (WHO), epilepsy is a non-communicable disease of the brain that affects people of all ages. It is the most common neurological disorders in the world affecting some 50 million people worldwide.
What to do when someone is having a seizure?
When someone is having a seizure, you must take A.C.T.I.O.N.
A- Assess
Assess the situation - are they in danger of injuring themselves? Remove any nearby objects that could cause injury
C- Cushion
Cushion their head to protect them from head injury
T- Time
Check the time - if the seizure lasts longer than five minutes you should call an ambulance
I- Identity
Look for a medical bracelet or ID card - it may give you information about the person’s seizures and what to do
O- Over
Once the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N- Never
Never restrain the person, put something in their mouth or try to give them food or drink
What triggers epilepsy?
A seizure is a sudden, uncontrolled electrical disturbance in the brain.
It can cause changes in behaviour, movements or feelings, and in levels of consciousness.