WUWF 88.1 – NPR for Florida’s Great Northwest, July 25, 2016
The Epilepsy Resource Center, based in Pensacola, is expanding its services to residents in the western Panhandle of Florida.
One in 26 people will be diagnosed with epilepsy at some point in their life, according to the Epilepsy Foundation. The diagnosis is given when a person experiences two or more seizures, which cannot be attributed to another cause.
“Simply put, epilepsy is a misfire of neurons in the brain,” said Center Director Laverne Baker. “Epilepsy affects more people than Parkinson’s disease, multiple sclerosis, autism, and cerebral palsy combined.”
Baker says ERC is partnering with the Epilepsy Foundation of Florida and Access Florida at the state Department of Children and Families. Florida is a ground zero of sorts: one in every 12 Americans with the disorder live in the Sunshine State, a total of around 400,000. But they are just the beginning.
“There is a national multiplier that we use, of three point two, of others that would become affected,” Baker said. “That would be siblings [and] caregivers. In Escambia County alone, that would be close to 7,000 people. Multiply that by three point two and we’re over 20,000.”
Epilepsy is not hereditary. There are a number of factors that can cause the seizures, with traumatic brain injuries [TBI] topping the list.
“Florida is an outdoor state, we have a lot of activities so kids are moving around,” says Baker. “In fact, 80,000 of those 400,000 Floridians are children. Also we have many military bases, so a lot of people in the service come back and have a traumatic brain injury.”
Cecily Chunderlek, a regional organizer with DCF, says the expansion takes the place of separate open enrollment periods scattered throughout the year, in order to help clients qualify for healthcare.
“Not only do we offer healthcare through the healthcare marketplace, but now we can help individuals through the Access Florida website [www.myflorida.com/accessflorida],” says Chunderlek. “We can help individuals sign up for the Medicaid program, the Medicare Savings program, and medically needy programs as well as give food stamp assistance.”
And such expansions are reaching across Florida from Miami-Dade and Broward Counties, to Jacksonville, Gainesville, and the western Panhandle: Escambia, Santa Rosa, Okaloosa and Walton Counties.
One challenge in reaching epileptics is dealing with the stigma that’s attached to the disorder; some feel uncomfortable about coming forward to get help. The Resource Center’s Laverne Baker says their core is case management. ERC tailors a plan of care for the individual. If a client cannot get on a healthcare program, the organization has funds available for the medically needy.
And Baker says they don’t have to go it alone.
“We have a parent support group, we have an adult support group and we also have a group that meets in Fort Walton,” Baker says. “We’re just launching a peer-to-peer support group that are high school students as we’ve found that is an emerging population.”
More information about the Epilepsy Foundation of Florida and the Epilepsy Resource Center can be found at www.EpilepsyFLA.org.
Listen to the interview here: http://wuwf.org/post/more-epilepsy-services-available-nwfl#stream/0