Here to Help and Enlighten
by Jeannine Gage
Nine years ago, Mike Sheehan was a healthy 50-year-old working as a fitness instructor when he had his first epileptic seizure.
“I went to bed one night and woke up in the emergency room,” he says. “It completely changed my life. I lost my job and my savings, everything.”
Mike was depressed and struggling without a job or health insurance when he heard about The Epilepsy Association (formerly The Epilepsy Association of Central Florida).
“I came here and I was able to get medical care, medication – all the stuff I needed,” he says. “It really saved me.”
Mike began volunteering for the nonprofit association and was eventually hired, joining the team as the prevention and education coordinator.
The association has served Orange, Seminole, Osceola and Brevard counties for more than 50 years, offering medical and case management services for those with epilepsy.
Branching Out in the Community
Headquartered in Orlando, the association is also planning to open an additional office in Sanford or Lake Mary this spring. Partnerships with local doctors and an in-house clinic are also being developed.
“We want to have a presence and participate in the community,” says David Manchon, executive director. “There’s a tremendously high number of people in Seminole County that we can better access and serve, and we want to make sure they know it.”
Briana Valderrama of Sanford will be happy when the office opens in Seminole County. She suffered her first seizure in high school 16 years ago. Someone told her about the association, and she has been receiving assistance from its team ever since.
“I was young and didn’t know what to do,” she says. “I didn’t know if I should go on medication. We were trying to find answers.”
That’s when Briana found Pachi Mangione, the association’s lead care coordinator. Pachi helps Briana, who is uninsured, find health care and medication. The Epilepsy Association covers some of the costs, too.
“Everything is very affordable for me,” says Briana, “and I can call them for anything. They’re always there for me.”
According to the National Institutes of Health, epilepsy is a chronic brain disorder that causes seizures – abnormal electrical activity in the brain. There are currently about three million adults and 450,000 children in the United States with the disorder. The Epilepsy Association encourages people to reach out for help before or after an official diagnosis.
“They may have had one seizure and don’t know if it’s epilepsy or not,” says David. “We’ll help them get a diagnosis.”
Dispelling Myths and Misunderstandings
Once a diagnosis is received, the association helps clients navigate what they need to do to get care, medical and otherwise.
Because they may have a seizure at any time, epilepsy patients may not be able to drive. Being in a workplace may not be safe for them, in part because a majority of people don’t know what to do when someone is having a seizure.
“Most people will try to hold their tongue down or restrain them,” says Mike. “You should do neither of those. Let the seizure happen. It should last a minute or two. If it lasts longer, then you should call 911.”
There are many misunderstandings about epilepsy, says David, including that everyone with epilepsy has grand mal seizures – those that make the person’s muscles jerk and spasm. In fact, there are many forms the condition can take. Epilepsy may cause fainting, breathing problems, and loss of bowel control or muscle tone.
“In children especially, it can manifest itself as a lack of focus, or daydreaming,” says David. “Sometimes they get diagnosed with a learning disability, and the dropout rate is higher for them. So, it’s important for educators to be aware of epilepsy symptoms.”
Adults with epilepsy may struggle in the workplace and in their personal lives because they don’t want people to know they have the condition.
“Epilepsy is invisible,” says David. “And people with epilepsy generally don’t want you to know they have it because they see people get scared and put up barriers. You can’t imagine coming out of a seizure and seeing your whole world change.”
Educating the public and spreading awareness about the disorder are key components of The Epilepsy Association’s mission. The association partners with other nonprofits such as The Sharing Center and local health clinics to offer wraparound services that include help with medical care, housing, health insurance, vocational training, and transportation.
“We also get out in the community by tabling or doing presentations,” says David, who is looking forward to expanding the nonprofit’s profile even more. “We really want a physical presence in Seminole County, so people know we are there to help.”
To learn more, visit EpilepsyAssociation.com or call 407-422-1416.