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Photo by Jon Anderson
Bee Lee, president and CEO of the natoinal Epilepsy Foundation, demonstrates to kindergartners at Rocky Ridge Elementary School in Hoover, Alabama, how to render first aid to someone experiencing a seizure on Friday, Oct. 6, 2023.
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Photo by Jon Anderson
Bee Lee, the president and CEO of the national Epilepsy Foundation, speaks to kindergartners at Rocky Ridge Elementary School in Hoover, Alabama, about how to help someone having a seizure on Friday, Oct. 6, 2023.
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Photo by Jon Anderson
Bee Lee, president and CEO of the national Epilepsy Foundation, at right, poses for a photo with state Rep. Susan DuBose, R0 Hoover, and Miss Alabama's Teen Elaina Burt during an Epilepsy Foundation event at Rocky Ridge Elementary School in Hoover, Alabama, on Friday, Oct. 6, 2023.
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Photo by Jon Anderson
Bee Lee, president and CEO of the national Epilepsy Foundation, instructs a kindergartner at Rocky Ridge Elementary School in Hoover, Alabama, how to render first aid to someone experiencing a seizure on Friday, Oct. 6, 2023.
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Photo by Jon Anderson
Hoover Mayor Frank Brocato, left, talks to kindergartners at Rocky Ridge Elementary School in Hoover, Alabama, about how paramedics help people with medical problems on Friday, Oct. 6, 2023.
The new CEO and president of the national Epilepsy Foundation was in Hoover last week as part of a national tour to better understand the needs of families across the country who live with the disease.
Bee Lee, who took the lead in the national organization in July, spent time at Rocky Ridge Elementary School, sharing with kindergartners the basics of rendering first aid to someone who is experiencing a seizure.
Lee simplified the key aspects of seizure first aid into three simple words to make it easier for the kindergartners to remember: stay, safe and side.
- STAY with the person who is having a seizure and call 911 if it lasts more than three minutes.
- Make the area SAFE by removing any nearby objects that could be dangerous to a person who is convulsing, such as chairs or desks.
- Roll the person on their SIDE to clear their tongue from their breathing pathway, place something soft under their head and don’t hold the person or give them water or food until they are out of the seizure, talking and no longer disoriented.
Lee’s visit to the Hoover school on Friday was just one of several stops in the Birmingham area. She arrived Wednesday and on Thursday observed two epilepsy-related surgeries at Children’s of Alabama hospital. One was the implantation of a device to help a child with seizure control, and the other was the implantation of a monitoring grid in the brain of a 3½-year-old girl to help locate and monitor her seizures.
“Children’s of Alabama has been an amazing partner with us,” Lee said.
Lee was able to talk with Children’s of Alabama physicians and several families dealing with epilepsy to better understand families’ needs and how the Epilepsy Foundation can help them.
HEALTH CARE EQUITY
She was especially touched by the story of an 8-year-old girl from south Alabama who had been experiencing seizures since she was 10 months old, she said. The girl’s family didn’t know she had epilepsy until about a year ago when she was airlifted to Children’s of Alabama after having a 27-minute seizure, Lee said.
The girl’s physician in rural south Alabama had told the family she had a “seizure disorder,” which was accurate, but never used the term epilepsy, Lee said. The girl’s parents didn’t really understand the diagnosis, and her doctor had discouraged them from coming to Children’s of Alabama for specialty treatment because the doctor didn’t think it was necessary, Lee said.
The mother said she had been led to believe that her daughter was just pretending to have seizures until she finally witnessed an extended one after they got to Children’s of Alabama, Lee said.
“For eight years, this family had been searching for answers,” she said.
It’s a prime example of a lack of equity in access to quality health care, Lee said. People in rural areas often lack access because specialists tend to be in urban areas, and people in urban areas often lack access due to economics or bias against people of color, she said.
Distance is a major factor because people with epilepsy often can’t drive due to their condition, and they have to have someone drive them to and from the specialist and stay with them while they are there, Lee said.
One of the Epilepsy Foundation’s main goals is to make quality care accessible to more people, she said. The organization hopes to accomplish that through education and awareness for the general public, special training about epilepsy recognition and treatment for educators, primary care physicians and general neurologists, she said.
Another way to combat the distance problem is through telemedicine connections with epilepsy centers, Lee said.
While Lee was in town, she also met with UAB epileptologist Dr. Tyler Gaston of the Veterans Affairs Epilepsy Center of Excellence in Birmingham. The Epilepsy Foundation was part of a coalition that advocated for additional money for epilepsy support through Veterans Affairs because of the high number of veterans with either epileptic or non-epileptic seizures, she said.
That effort led to the establishment of the epilepsy center in Birmingham, and Veterans Affairs is launching a telehealth program that can cross state borders, she said.
Lee also met with Birmingham Mayor Randall Woodfin to thank him for the Birmingham On Demand transportation service that provides people with minivan transportation around the city for $1.50 per trip and to ask for his support in trying to expand epilepsy training and awareness in Birmingham schools.
She met Hoover Mayor Frank Brocato, who had a 42-year career as a Hoover firefighter and paramedic before becoming mayor, at Rocky Ridge Elementary on Friday as well. The mayor spoke to Rocky Ridge’s kindergartners about how firefighters don’t just fight fires but help people with medical problems, too.
Miss Alabama’s Teen Elaina Burt, a Riverchase resident who works to raise awareness about epilepsy, also was at Rocky Ridge and read to the kindergartners a children’s book she wrote to help children better understand people with epilepsy and people with disabilities.
Photo by Jon Anderson
Miss Alabama's Teen Elaina Burt of Hoover, Alabama, reads a book about epilepsy and disability inclusion to kindergartners at Rocky Ridge Elementary School in Hoover, Alabama, on Friday, Oct. 6, 2023.
Lee said a big part of the Epilepsy Foundation’s mission is to serve as a resource for families and help them realize their options for medication, therapies and surgeries and to help them navigate the health care and insurance industry to get better quality of care.
She and many members of her staff, including Sara Franklin, a Hoover resident who is the regional director for the foundation’s East Region, really do understand the difficulties people face because they have epilepsy themselves, she said.
Lee had her first seizure at age 19 when she was in college, and it took her two years to get a full diagnosis, she said. The first neurologist she saw prescribed her medication that controlled her seizures but greatly diminished her quality of life, she said.She was sleeping 16 hours a day, and when she wasn’t sleeping, she was in a “brain fog,” she said. Her first doctor suggested she go on long-term disability, but thankfully she got a second opinion from another neurologist that changed her life, she said.
“We found a treatment plan that worked for me,” Lee said. “I fully understood my epilepsy in a way that never had been described to me. I understood what self-monitoring tools I could utilize and what my triggers were. Although I still live with epilepsy, I’ve been seizure-free since 2015. I really credit my opportunity to partnering with a physician that took time to listen to me and where I was hurt.”
BATTLING EPILEPSY STIGMA
Still, there’s an incredible stigma about epilepsy in workplaces and much misunderstanding about the disease, Lee said.
She hopes that sharing about her personal experiences can help lead to changed outcomes and better care for other people, she said.
That involves care for the physical aspects of epilepsy, but also for better mental health, she said. Many people with epilepsy experience a psycho-social impact as well, she said.
Not being able to drive and the unpredictable nature of when the disease will strike limits employment and social opportunities and can lead to isolation, she said. Plus, it can make people extremely tired and disoriented, she said.
“It’s disruptive to your life,” Lee said. “Eighty percent of people living with epilepsy experience depression.”
She wants people to know they are not alone, she said.
“One in 26 people have epilepsy, and one in 10 people experience a seizure in their lifetime,” Lee said. “There are 3.4 million people living with epilepsy in the United States. … We’re here for you. We’re here to support you. We understand what you’re going through.”
For more information about Epilepsy Foundation Alabama, go to efa.org/alabama.
