Long ago, little was known about epilepsy, and few resources were available for families subject to this condition. Although today over five million people suffer from epilepsy and one in twenty-six people will experience an epileptic event in their lifetime, this disease is still shrouded in myths and stigma.
Luckily for many Floridians, fifty years ago the Epilepsy Association of Central Florida was conceived by the mother of an adopted child in her own kitchen as an invaluable resource for parents with epileptic children. From this small group of concerned parents gathered in a kitchen in Central Florida, the oldest epilepsy non-profit in Florida and one of the nation's first, was created.
The Epilepsy Association of Central Florida has certainly made its presence felt for many Floridians. Prior to the organization's inception, there was a total lack of information and support available for residents of Florida. "There was no Internet and many physicians didn't understand the condition like they do today," says Executive Director Charles "Chuck" Carmen. "Today the Epilepsy Association of Central Florida has grown into a multifaceted organization providing various programs for those in need."
One of these major programs is the organization's own Case Management and Epilepsy Medical Services division for economically disadvantaged, or medical coverage disadvantaged, individuals with epilepsy. This program provides these individuals with a place to turn to other than emergency rooms for care.
"We give each person or family a personal Case Manager to develop not only a medical plan but a life plan to assist them: seeing one of our neurologists, getting their medications, getting diagnostic tests like MRIs and EEGs, following them with laboratory tests, finding them housing, food, transportation, support, and more," says Carmen.
The E.A.C.F. also conducts over 250 community education presentations each year. These illuminating presentations boost community-wide understanding of epilepsy and help break down the myths and stigma surrounding this condition. Moreover, the organization puts on social events to let individuals with epilepsy know they are not alone. These include trips to a Solar Bear's hockey game, an Orlando Predator's game, and Orlando Magic game and raise epilepsy awareness while bringing people together.
Thankfully, E.A.C.F. is successfully raising awareness about Shaken Baby Impact Syndrome, otherwise known as S.B.I.S. This condition affects a staggering amount of children each year, often leading to blindness, seizures, and paralysis. Shockingly, some form of head injury is the leading cause for acquired epilepsy.
"I had a pediatric neurosurgeon with an office in the building where we used to be. He called me to come down to his office and handed a 3 year old to me, blind, seizures, and paralyzed due to shaking. The dad was in prison, the mother lost the child and the grandparents were raising him," says Carmen. "I went to our board and said we are not a child protection agency but one of our goals is to prevent epilepsy, and I wanted to start educating our community and Florida on SBIS."
Not surprisingly, Central Floridians supported Carmen approved these reforms. With a grant from the Orlando Sentinel, E.A.C.F. was able to produce a video to send to high schools in Florida. "It took on a life of its own, and now over 50,000 are in use around the United States," says Carmen.
More and more people around the country are speaking out about epilepsy every day. Epilepsy awareness is spreading like wildfire all thanks to a small group of parents gathered in a kitchen in Central Florida over fifty years ago.