With the aim of reducing the stigma and ignorance surrounding epilepsy here, the Epilepsy Foundation of Guyana is hoping to begin educating teachers and students about the condition and how to deal with it in schools.
Speaking to Stabroek News on Monday, executive member of the Foundation, Christopher France, said that they have been focusing on spreading awareness of epilepsy as far and as wide as they could. “We are focused on getting awareness out there and we have started the process. Right now our greatest concern is to keep the momentum going,” France said.
He disclosed that the Foundation is currently working on classroom education exercises, not only for students but for teachers as well.
The educational exercises and training would allow the students to gain knowledge about the condition, while learning about how to act and deal with someone having an epileptic attack. “In terms of school visits, we haven’t started for this year and we are still in discussion but we would like to get it started by the new school term. We will prepare the materials,” France said. He related that they would be starting with the private schools first since there is less “red tape” to go through.
In addition to the educational exercises, France explained that the Foundation is working on a strategy to make epilepsy medication more easily available to patients. “I am an epileptic so I can speak from my experience. The medication is usually very expensive and while they are available for free at GPHC [Georgetown Public Hospital Corporation] and at the health centres that fall under the jurisdiction of GPHC, they don’t always have,” he said. France related that sometimes, other places would have the medication when GPHC runs out but it is usually very expensive and most patients or their parents are unable to afford it.
“So we are trying to assess the importation of the medication and however we can possibly convince the high powers to import more of the medication or supplement the cost. It’s something that is still in the works and we are still in the assessing stage of it and trying to figure out where the shortcomings are and how we can address it,” he said. The youth added that they have been stymied because they are unable to access the figures for the medication from the GPHC pharmacy’s bond.
“I was personally responsible for getting that and I’ve been waiting and reminding them for the longest while but I still haven’t gotten the numbers and that is what is holding us back,” he said.
France also explained that in addition to the educational exercises and the medication proposal, they want to carry out an audit to assess the general needs of epileptics and the availability of treatment. He disclosed that the Foundation is working on becoming affiliated with some regional and international epilepsy associations, which would give them access to more resources.
“The point of it (is) we are trying to raise awareness. If we have more people aware of epilepsy and how to deal with it, then we are definitely growing,” France said.
He asserted that the Foundation has played a positive role in reducing the stigma.
Recalling his personal experience of having persons around him believing that “obeah” was the main cause of epilepsy, France said he was able to witness a change in this belief. “A lot of people are still ignorant and still believe it’s because of obeah and I know many people, due to our work, know now that it is actually a neurological problem and these are people I knew before that believed it was obeah,” he said.
France emphasised that he believes that the Foundation has had a positive influence on reducing the stigma and ignorance regarding epilepsy. He said the first phase was to establish the organisation and get the information out and the second phase, which they are currently in, is about taking it a step further to reach more people.
The Foundation will be holding its annual epilepsy awareness walk in November and will be convening its annual general meeting on June 29 at the Burns Memorial Church on Irving and Anira Streets at 1pm.
