Although epilepsy is one of the more common neurological conditions in the United States, those who have it and others who are affected by it say it is still largely misunderstood.
"You can have diabetes, heart problems and other conditions and speak about them, no problem," said Robert Fiore, 55, who was diagnosed with epilepsy when he was 9 months old. "But there is still a misunderstanding and fear of epilepsy."
Centers for Disease Control and Prevention.
"The statistics are that in your lifetime, there is a 10 percent chance of having an epileptic seizure," said Dr. James Morris, a neurologist who specializes in epilepsy. "That's very high when you think about it, one in 10."
Yet, despite the fact that it is widely recognized health condition, epilepsy, or seizure disorder, remains largely out of the spotlight, often because people who have it are fearful about opening up publicly.
"There has been a longstanding stigma associated with it, and some real fear," said Linda Wallace, executive director of the Epilepsy Foundation of Connecticut, which works to improve the lives of those with epilepsy.
"Unlike some disabilities, it is incidental. It doesn't happen all the time," she said, adding that when it does a person can suddenly lose total control of their actions and movements. "I believe that is what contributed to the stigma."
A misunderstanding of what causes the seizures and how to handle someone who is experiencing a seizure, has led to negative attitudes about the disorder, many said. Such attitudes also can make finding a job, or keeping one, more difficult for those with epilepsy.
The disorder has been a part of society for thousands of years. As far back as 400 B.C., Greek physician Hippocrates identified epilepsy as a brain disorder. It was a radical departure from others who saw it as a supernatural power, likening seizures to trances when visions or signs were received. Some feared demonic possession.
In reality, epilepsy is a chronic neurological condition with recurrent, spontaneous seizures caused by temporary disturbances in the brain. In effect, nerve cells emit an abnormal power surge, which can cause involuntary movements, behavioral changes, and a loss of consciousness or changes in sensation.
The seizures are not necessarily uniform from person to person, but an individual typically will have similar disturbances. The disorder runs along a spectrum, with some experiencing nearly imperceptible seizures (such as staring into space), while others may be dazed and unresponsive for several minutes. Still others may lose consciousness, convulse, fall, cry out, make sounds or become suddenly rigid and require a greater recovery time.
"All kinds of neurological phenomenon are generated," said Morris, who noted that one patient would ask for aspirin and a glass of water during his seizures.
But the behavior is not often remembered.
"My entire life, out of hundreds of seizures, I have only had recall of two of them," Fiore said. "The best analogy I can give is to think of a kind of switch, when you are in control, you can turn it on and off at a steady pace. For a seizure, imagine it is stuck in the `on' position."
However, if someone has a seizure it does not necessarily mean he or she will be diagnosed with epilepsy. There are other triggers, too, such as a head injury, low blood sugar, drug or alcohol withdrawal, scarring in the brain, a fever or a brain tumor.
Epilepsy is the diagnosis for recurrent seizures for which there is no definitive cause. The diagnosis follows extensive testing, during which other causes are ruled out, said Dr. Toni Lyn Salvatore, director of the pediatric center at Greenwich Hospital in Connecticut.
Once a diagnosis is made, treatment options are assessed, typically a combination of medicines, including anticonvulsants. There are surgical options, too, but not everyone is a candidate. Others have turned to a ketogenic diet (high in fats, low in carbohydrates) and nerve stimulation treatments.
Maria Dominici recalled going through such a process when her daughter, Jaya, 8, was about a year old. Dominici wanted to know why her daughter would often pull her knees into her chest and cry as if her stomach hurt her. These bouts, which were later identified as seizures, might only last a minute.
Not long afterward, Jaya was diagnosed with epilepsy after doctors videotaped her and assessed brain activity for 24 hours. She was soon on medication, which lessened and shortened her seizures. Jaya, who also has autism, ultimately was weaned off the drugs and has remained seizure-free.