As it increases its visibility, the Epilepsy Foundation of Guyana (EFG) has started a support group and it has also been able to procure a donation of epilepsy drugs for the Georgetown Public Hospital (GPH).
Executive member of the group Christopher France told Stabroek News yesterday that the group has been working largely on advocacy and awareness during this year. He pointed out that earlier this month members visited the Diamond Special School and educated students and teachers on epilepsy and how to deal with someone having seizures.
“We had a few school trips planned and through our Facebook page, the Epilepsy Foundation of Guyana, the director of special schools from the Ministry of Education Keon Cheong messaged us… and so we ended up visiting the Diamond Special School,” France said. He explained that they also held a small session with some of the students’ parents where they were able to discuss some of their concerns.
France explained that it was the visit to the school that influenced their decision to start the support group, which meets every second Saturday of the month at 1 pm at Burns Memorial Presbyterian Church on Irving Street. “It is opened to anyone interested in epilepsy.
Persons who have family members who are epileptic and just need support. We had invited a few of the parents from the special school and it’s just a safe place for everyone to talk openly and share their experiences and advice,” France said. As the support group grows, they are going to split it into an adult support group and a parents and children support group, he added. “It is also a good means by which epileptics, who themselves might be ignorant, can get good advice about doctors and other issues,” he said. The group is currently working on arranging with the GPH to make it easier for doctors associated with the foundation to refer their patients to the hospital.
In terms of the stigmatisation of epilepsy, France explained that while the group hasn’t noticed much of an improvement on a large scale, on a smaller scale with relatives, family members and other persons it has seen a drastic improvement. “We launched the Facebook page because we understand the reach of having Facebook at your disposal and we try to update it regularly. We are also trying to target radio in the new year,” he said.
France said that while the organisation understands the importance of awareness, it was equally focused on advocacy to ensure that patients receive better treatment and have better access to medication.
On the latter front, France said the EFG has been working together with the HERO Foundation and was able to secure a donation of the commonly used antiepileptic drug, Keppra. “HERO works with different groups and hospitals to donate medication and we worked with them and got them to donate the Keppra.
The donation wasn’t to the foundation itself, well it was donated to us but with the intention of the foundation facilitating the distribution to the hospitals and health centres,” he pointed out. Now that the medication is available, France said, they are working on alerting the doctors at the hospitals and health centres to its availability so as to ensure that patients get it. “We are also working on a memorandum of understanding so that it can become a standard practice between us, HERO and the hospital,” he added.
The EFG has been around for the past two years and is now registered with the International Bureau for Epilepsy.
“We are constantly working on awareness and doing as much advocacy as we can on our Facebook page. We upload daily and share articles about our activities and first aid tips because we find that the more people are reminded the better it is,” he said. EFG can be contacted on 656-1866.
