IN observance of International Epilepsy Day today Monday, the Epilepsy Foundation Guyana (EFG) organised an awareness walk yesterday to kick-start the educational outreach activities planned for the day.

Despite the intermittent rainfall, scores of persons either living with epilepsy or simply standing in solidarity with those who are, came out dressed in purple at 06:30 hrs to march to the National Park for the cause.

President of the EFG and professor of economics, Dr. Thomas Singh related, “We’ve always had an epilepsy walk since the foundation started in 2014.”

This walk is one of the major activities that are hosted by the small organisation of about 30 persons to promote awareness of the disease that is commonly misconstrued as a ‘superstitious phenomenon’.

The World Health Organization (WHO) notes that epilepsy is a chronic disorder of the brain that affects people of all ages worldwide. Singh once lived with epilepsy himself.

He shared that he began getting ‘epileptic attacks’ while he was in school and they continued through his time spent in graduate school.

These attacks, or unprovoked seizures — as defined by the WHO — are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalised), which may be accompanied by loss of consciousness and control of bowel or bladder function. They result from excessive electrical discharges in a group of brain cells, which can happen in different regions of the brain.

Epilepsy can be treated successfully by anti-epileptic medication, and fortunately for Singh, he was successfully treated. He recalled, “Eventually I was able to come off medication because I was introduced to Valproic acid [a generic name of a widely used antiepileptic drug] that eased my seizures,” and he highlighted, “I’ve been seizure-free for a while.”

But because of his experience with the disease, he is cognisant of the perceptions associated with epilepsy. Many misconstrue the seizures as ‘spirit possessions’ of the body, though it is a scientific, neurological disorder of the brain.

With this in mind, the foundation was birthed in 2014 with the aim of dispelling the misconceptions and stigma, while providing support, care and treatment to persons living with epilepsy, commonly called epileptics.

Through the robust awareness activities conducted, such as Sunday’s walk, Dr. Singh noted, “We are able to reassure them that [it] could be medically managed and that there is no stigma.”

A sport-oriented support group is held every second and fourth Saturday at the Burns Memorial Presbyterian Church in Queenstown, to provide a safe-space to epileptics where they can be themselves without fear of stigma.

Additionally, through the foundation’s ‘Care and Treatment’ subcommittee, access to neurologists abroad and to a widely used seizure medicine, ‘Keppra’ from the Health and Education Relief Organisation (HERO) is facilitated. “We do it to improve access to neurological support,” Singh said.

Adding to this support would be the use of the recently donated Electroencephalography (EEG) machine, from a UK-based charity known as Tele-Eeg. With this machine, electrical activity in the brain can be evaluated and interpreted. While use of this is currently only available to members of the foundation, the president noted, “We will soon be rolling out the guidelines and protocols for access to the EEG.”

International Epilepsy Day is a joint initiative by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), organisations which the local foundation has joined after its initiation in 2014.

Today, the foundation in collaboration with the University of Guyana (UG) Student’s Society will be hosting an Epilepsy Awareness discourse at the Education Lecture Theatre on UG’s campus from 12:15 hrs to 13:30 hrs.