We have come a far way with epilepsy – specialist
People with epilepsy or what Jamaicans term as ‘fits’ are just like everyone else, except that they are prone to recurrent seizures. A seizure is caused by a temporary change in the way the brain cells work.
One seizure does not signify epilepsy. Epilepsy is a chronic non-communicable disease of the brain that affects around 50 million people worldwide. According to the World Health Organization (WHO), it is characterised by recurrent seizures, which are brief episodes of involuntary movement that may involve a part of the body (partial) or the entire body (generalised) and are sometimes accompanied by loss of consciousness and control of bowel or bladder function.
Seizure episodes are a result of excessive electrical discharges in a group of brain cells. Different parts of the brain can be the site of such discharges. Seizures can vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions. Seizures can also vary in frequency, from less than one per year to several per day.
November is Epilepsy Awareness Month, and the Jamaica Epilepsy Association continues its mission to improve the lives of persons with epilepsy living in Jamaica. Through proper training and heightened awareness of how to overcome and manage epilepsy, the association believes they can create a more productive and prosperous Jamaica.
The Jamaican Epilepsy Association was founded in 2002 by Nora Perez and is a registered non-profit organisation (NGO), funded by donations and fundraising events. This association is the only one of its kind in the English-speaking Caribbean.
The celebration of Epilepsy Awareness Month encourages conversations between the public and the Jamaican Epilepsy Association with members sharing their experiences. The association is planning activities to highlight this medical condition.
Special events are usually planned worldwide in more than 120 countries in observation of the month. Every year, people come together to celebrate and highlight the problems faced by persons with epilepsy, their families and caregivers.
Dr Amza Ali, one of Jamaica’s leading specialists on epilepsy, has done work over the years to advance treatment and raise awareness around the disorder for the last 20 years.
Ali has helped to establish the Jamaica Epilepsy Association and the Jamaica League Against Epilepsy, which morphed into the Epilepsy Society of the Caribbean, the first multination chapter of the International League Against Epilepsy.
Following receipt of the Ambassador for Epilepsy Award, given biennially to a few people chosen from around the world, he stated that there has been an increase in the number of persons with epilepsy who are getting good care.
“We don’t have to do this ourselves any more. Through education programmes, we can see the impact of it. I can see the impact of this as a practitioner in the hospital. The way referrals are made now, it tells you that people have a lot higher knowledge about epilepsy than they used to,” Ali said.
However, despite the success in epilepsy awareness, Ali believes the country has a far way to go in the treatment and diagnosis and treatment of epilepsy. There are about 30 per cent of people in Jamaica that do not respond to medical treatment and the specialist is on a mission to find the remedy.
In Jamaica, epilepsy can affect anyone, at any age and from any walk of life. However, boys and men tend to be slightly more prone than girls and women – though no one really knows why. Many of those who develop epilepsy start having seizures during childhood, but it can develop at any age.
Globally, an estimated five million people are diagnosed with epilepsy each year. In high-income countries, there are estimated to be 49 per 100,000 people diagnosed with epilepsy each year. In low- and middle-income countries, this figure can be as high as 139 per 100,000.
This is likely due to the increased risk of endemic conditions such as malaria or neurocysticercosis; the higher incidence of road traffic injuries; birth-related injuries; and variations in medical infrastructure, the availability of preventive health programmes and accessible care.
Epilepsy is not contagious and can be controlled. Up to 70 per cent of people living with epilepsy could become seizure-free with appropriate use of anti-seizure medicines.