Walk raises epilepsy awareness

Walk raises epilepsy awareness

Published: Thursday September 23, 2010 by Carole Walker, Correspondent

Robert Fiore of Milford, president and founder of Connecticut Epilepsy Advocate, said that even though the first known description of epilepsy, from Hippocrates' "On the Sacred Disease," dates to 350 B.C., many people today, more than 2,000 years later, do not understand the condition and so the stigma remains.

Hippocrates wrote, "Persons habituated to the disease know beforehand when they are about to be seized and flee from men; if their own house be at hand, they run home, but if not, to a deserted place, where as few persons as possible will [see] them, and they immediately cover themselves from shame of the [affliction]."

Connecticut Epilepsy Advocate, a nonprofit organization, was created by Fiore in November 2009 in large part to educate people about the condition, provide support and resources, and help erase the stigma often associated with epilepsy.

The first annual "Walking Miles for Epilepsy" occurred Wednesday, Sept. 15, with Fiore beginning his solo walk on U.S. Route 1 at the Housatonic River, and ending 10 miles later at the University of New Haven.

Fiore said, "The whole idea was to let people know about the organization and let them know we are here."

To that end, Fiore submitted postings to public access channels, and posted the information on the Connecticut Epilepsy Advocate Web site, ct-ea.org Fiore hopes to make this an annual event and involve more people, whether they want to walk 500 feet or five miles for epilepsy.

To date, Connecticut Epilepsy Advocate is continuing to receive donations for the walk, and all proceeds will go to Yale New Haven Hospital's epilepsy program.

According to Connecticut Epilepsy Advocate, epilepsy is a neurological condition that from time to time produces brief disturbances in the normal electrical functions of the brain. Epilepsy affects more than 50 million people in the world, more than three million in the United States, and approximately 60,000 in Connecticut.

Fiore, diagnosed with epilepsy at nine months old, has had hundreds of epileptic seizures throughout his life.

"It is difficult for many people who suffer from epilepsy to live a normal life," he said. "After I'd regain consciousness following a seizure, I'd be out for the rest of the day because of all the excruciating head pain and the toll it would take on me.

"In some cases", Fiore continued, "it's hard for a person to get a job or have a relationship. It's tough on young people because kids will see kids with epilepsy have a seizure and often they won't want to touch them or have anything to do with them."

Fiore has been free of seizures for the past three years through a combination of prescription medicine and a temporal lobectomy, a surgical procedure in which a cut is made to the place in the left temporal lobe that triggers seizures.

In addition to the annual Walking Miles for Epilepsy event and hosting the Web site ct-ea.org Connecticut Epilepsy Advocate has a Facebook page that provides information and support to its 1,170 friends, and it has plans for future events and fund-raisers.

Fiore said, "We at Connecticut Epilepsy Advocate are going to do everything we can to erase the stigma of epilepsy by helping to inform people about epilepsy, and provide support in any way we can."