Fearful of losing their driver’s licences, some epileptics are keeping their diagnoses secret, as the Road Traffic Act makes it illegal for them to drive.
This is one of several pressing issues for founder of the Jamaica Epilepsy Association, Nora Perez.
“There is a huge stigma about epilepsy in Jamaica, and people say people who have seizures can’t drive. People who have diabetes drive; if you take your medication, you are not going to go into a diabetic coma. People who have stroke can drive once you are rehabilitated,” she argued.
“It is not really fair, because many of the developed countries allow people with epilepsy to drive,” said Perez, who explained that there should be a green light for licences once persons are certified to be on medication and seizure free.
Regulation 46 of the Road Traffic Act bars persons with epilepsy from driving, but efforts to get the legislation amended have proven futile. Despite strong advocacy for this change, there has been stiff resistance to making that amendment.
Last year, both chambers of Parliament approved sweeping amendments to the Road Traffic Act, which was first drafted in 1938. It is expected to become law in weeks.
Director of the Road Safety Unit in the Ministry of Transport and Mining, Kenute Hare, is among those who feel that the prohibition should remain.
“If somebody should get into an epileptic fit, right, they really have no control over the motor vehicle. Epilepsy affects the central nervous system of the body, and the lawmakers at the time thought it prudent to not issue driver’s licences to persons who are epileptic,” he said.
“I would not want to be in a situation and to have to deal with a case where somebody involved in a collision got an epileptic fit.”
Perez toldThe Sunday Gleaner that a seizure generally lasts for less than two minutes.
“The average time for a seizure is a minute and half. I think people are more understanding now that it is a condition that can affect anybody at any time,” she said.
Notwithstanding this, Hare pointed to the fact that the Road Traffic Act is meant to protect all road users.
“When you get into a fit, it takes a while for you to get back out. Traffic crashes occur within 90 to 150 milliseconds, not a second. No crash occurs in one second,” he argued.
Perez has found that the chance of having a seizure is drastically reduced when an individual is able to purchase their medications, but some individuals with epilepsy have been finding it difficult to find or maintain a job.
“Some of the anti-epileptic medications are quite expensive. The National Health Fund helps with a substantial amount, but many people don’t have insurance,” she explained, while noting that while the cost varies, some persons are paying as much as $16,000 a month.
“Some people have a very difficult life because they cannot get a job, or if they have a job and they have a seizure at the workplace, then people get afraid and ask them to go home,” Perez said.
The Epilepsy Association founder said that members of the organisation have been going into schools and workplaces to sensitise people about what they can do whenever someone has a seizure.
“Sometimes, as soon as an employer finds out that you have had a seizure at work, they get nervous,” she said.
Ill-conceived myths also fuel stigma.
“There are a lot of myths about that, about the sneakers. The thyme and the scallion, and all of that is nonsense. It is pure old wives’ tales. Scallion and thyme do not work,” she said, while advising that the person should be left alone until the seizure subsides, or be assisted to turn on to their side.
Perez said the association, which she founded in 2002, has more than 160 members. She started the organisation out of concern for a close family friend who was diagnosed with the nervous disorder.
While persons with the condition still suffer discrimination, Perez has found that Jamaicans are becoming far more knowledgeable about epilepsy.
“People are understanding that epilepsy is not a terrifying condition to have and that it is not involved with obeah or duppies in the body, which a lot of persons thought it was,” she said.