IN recognition of International Epilepsy Day 2024, the Epilepsy Foundation of Guyana (EFG) will today join healthcare professionals, advocacy groups, and individuals living with epilepsy and their families in Guyana and around the world to raise awareness and understanding of this neurological disorder.
International Epilepsy Day is organised by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), of which the EFG is a full member.
According to a press release issued by the EFG on Sunday, epilepsy, though often ‘invisible’ if not associated with tonic-clonic or grand mal seizures, has a significant impact on individuals, families, and communities.
It added that according to the World Health Organisation (WHO), epilepsy is a chronic non-communicable disease of the brain that affects people of all ages. Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases, globally. Further, nearly 80 per cent of people with epilepsy live in low- and middle-income countries.
According to the WHO, it is estimated that up to 70 per cent of people living with epilepsy could live seizure-free if properly diagnosed and treated; the risk of premature death in people with epilepsy is up to three times higher than for the general population and three-quarters of people with epilepsy living in low-income countries do not get the treatment they need.
Additionally, in many parts of the world, people with epilepsy and their families suffer from stigma and discrimination.
The EFG said that despite its prevalence, epilepsy remains shrouded in stigma and misunderstanding.
“Many people with epilepsy experience discrimination, social isolation, and limited access to healthcare and education. As such, the focus of International Epilepsy Day is on the implementation of the World Health Organisation’s [WHO] 10-year Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (2022-2031) or IGAP.”
“IGAP is a 10-year roadmap that contains a specific strategic objective to strengthen the public health approach to epilepsy and two global targets aiming to close the major treatment and inclusion gaps for people with epilepsy worldwide: by 2031, countries will have increased service coverage for epilepsy by 50 per cent from the current coverage in 2021 and 80 per cent of countries will have developed or updated their legislation to promote and protect the human rights of people with epilepsy by 2031,” the press release said.
It added that one of the key barriers to achieving these epilepsy-specific global targets is the low levels of health literacy and the high levels of misunderstanding and misconceptions about epilepsy.
“This lack of knowledge translates into social stigma and exclusion and leads to the discrimination of [sic] people with epilepsy across all levels of society. The EFG was set up to address these very issues.
“Over the years, the EFG has provided key services to the community of people who live with seizures in Guyana. For a small fee, we collaborate with the UK Charity TeleEEG to perform EEGs and to get them interpreted by experts in the UK. We are happy to say that this service is now back on stream with upgraded equipment and software. We also partner with ROW Foundation, an international social enterprise, to provide anti-seizure medication for free distribution to persons living with epilepsy,” the organisation explained before adding that over the years, it has brought neurologists specialising in epilepsy to Guyana for medical outreaches, and has held awareness sessions at schools and companies.
Further, it was noted that the organisation is now resuscitating its support group for persons living with epilepsy and their caregivers and has also successfully partnered with the Ministry of Public Health and the Special Education Department of the Ministry of Education.
This year, the EFG marks its 10th anniversary, which is a signal achievement as it operates only with dedicated volunteers.
The organisation used the opportunity to thank all those agencies and individuals who have supported it over the years, and to assure them of the continued commitment to the cause of improving how people living with epilepsy are perceived, accepted, and valued; ensuring that they get the best medical treatment and medication available and that this is done affordably and helping people with epilepsy/seizures to be able to participate as fully as possible in all life experiences in Guyana.
Persons wishing to be involved in the work of the EFG can register at https://shorturl.at/oAGMT or make contact via epilepsyfoundationgy@gmail.com or WhatsApp +592 645 7776.
