Epigraph Vol. 22 Issue 1, Winter 2020
Thousands seek information, education and connection at Epilepsy Awareness Day at Disneyland
Epilepsy Awareness Day at Disneyland was supposed to be a one-time event in 2012. Instead it’s become a unique opportunity for people with epilepsy, their families, and physicians to interact, learn, and sometimes change their lives.
In 2012, Candy and Brad Levy wanted to give back to the community after their daughter Sofie’s successful epilepsy surgery. Their plan: Invite people with epilepsy and their families to spend a day together at Disneyland. They could meet other people having similar experiences, enjoy the park, and raise awareness of epilepsy by wearing purple t-shirts.
They expected about 200 people; 900 showed up. Despite the event’s success, the Levys had no designs on continuing it.
Until they spoke with neurologist Deborah Holder, one of those 900 people. Holder had recently moved to California—she’s now director of the comprehensive epilepsy program at Children’s Hospital of Los Angeles—and attended the day with her sister, who’s a Disney fan.
Fun + Education = Success
Education is Holder’s passion. “What I see in people who come to me for a second or third opinion is a lack of education,” she said. “Sometimes I’ll ask what type of epilepsy they have, and they don’t know. They don’t know what seizure type they have, what syndrome they have. You wouldn’t see that with other conditions.”
Holder realized that while physicians could take advantage of continuing education and find new information at any epilepsy conference, patients and their families had no such resource.
What about melding a day at Disneyland with an educational expo, where patients and their families could learn more about epilepsy, talk to doctors, and better understand treatment options?
“I thought we could make this so much more,” she recalled. “We do it at Disneyland because, well, it’s Disneyland! You do it where people want to come, and then you sneak in some teaching and it’s a win-win.”
Popularity and respect
The Levys, Holder, and others organized a second Epilepsy Awareness Day in 2013, complete with the education expo. It’s grown and evolved every year since: In 2019, more than 5,600 people registered to attend the event, which now includes two days of presentations, discussions, vendors and other educational opportunities, as well as the day at Disneyland.
“I never would have believed the response,” said Brad. “We did not see ourselves here.”
In addition to its dramatic growth, the event also has gained esteem. “We have the respect and attention of 30 level-4 epilepsy centers,” said Brad. “When we invite doctors, they respond. At first, we were begging pharmaceutical companies for sponsorship; now they call us. It’s amazing that in such a short time we have built the largest gathering of epilepsy patients and physicians in the world.”
The unique opportunity for patients and families to meet one another and mingle with some of the top epileptologists in the United States has attracted attendees from nearly half of US states and at least six other countries, including Japan and Australia.
The right information at the right time
“Education is power,” said Holder. “Even with all the information out there… well, there’s so much out there. How do you know where to look and what to pay attention to?”
Plus, she noted, nothing can replace face-to-face communication. “You lose something if you do it all online. Meeting another family, meeting a doctor in person—there’s something about that personal contact that makes a difference,” she said.
The opportunity to ask a physician anything, with no time constraints, can be transformational, said Holder. Solomon Moshé, who has attended the event for the past several years, agreed.
“The doctors are there, they’re accessible, and any doctor-patient relationship complications don’t exist, so it’s more relaxed,” said Moshe, the Charles Frost Chair in Neurosurgery and Neurology at the Albert Einstein College of Medicine/Montefiore Medical Center, New York. “People might feel more confident talking about issues with their own doctor than they were before, because they’ve had these conversations.”
The Bowens’ story
By the time John and Katie Bowen attended Epilepsy Awareness Day at Disneyland in 2018, John—who had been in law enforcement—had dealt with seizures for nearly 20 years. He’d had two surgeries (one to remove a tumor), had a vagus nerve stimulator and tried “pretty much every epilepsy drug there is,” said Katie.
John still had seizures just often enough that he couldn’t drive, and doctors told the Bowens that was the best it would ever get. The side effects from medications brought drowsiness, brain fog, and anger. In early 2018, John weathered a bout of phenytoin toxicity that left him seeing double and unable to walk.
“[The toxicity] was just the last straw,” said Katie. “I’d seen an ad on Facebook or something for the Epilepsy Awareness Day and I persuaded him to go, to see if we could find something to help him. After 20 years, you think you know everything, but there’s all this research going on, so you never know.”
The Bowens listened to a presentation about epilepsy surgery and talked to the physician afterward. They sent him John’s medical records, and about a month later they had an appointment with him.
Though other physicians had said John couldn’t have surgery, the new team concluded that he was a candidate. He underwent a third surgery in March 2019 and has been seizure free since.
The Grahams’ story
The Grahams came to their first Epilepsy Awareness Day in 2013, about 4 years after their son Brock’s diagnosis. His mother, Mandy, was “less than happy” with Brock’s care: His doctors didn’t speak to him directly, and she usually felt rushed through an appointment. Brock’s diagnosis had been given over the phone, a week after doctors told the family that his seizures were “a fluke” and nothing was wrong.
“Then they called and said, ‘Your son has epilepsy and we’re going to start him on Keppra and we’ll see you in two months. Any questions?’”
Mandy was floored. “At that time, I’m not sure I know what epilepsy actually is. And I know that I don’t know what Keppra is,” she said. “But I’m not very outspoken at that point, so I just go along.”
As Brock’s condition progressed, Mandy realized that she wasn’t sure what their options were, or what made a good neurologist. She started learning about patient advocacy and researching information online. She came across an online announcement about Epilepsy Awareness Day at Disneyland.
“A meeting that has Mickey Mouse and epilepsy,” Mandy said. “Are you kidding me? Those are two of the most important things in my world!”
The Grahams visited in 2013 and 2014; after their second trip, they sought a second opinion. As a result, they now have roundtrips of about 3,000 miles for Brock to get his epilepsy care. “We do it because our neurologist there is amazing; the care is amazing,” said Mandy. “It has changed our lives. Before, we did not know what we were missing.”
The family also continues to attend Epilepsy Awareness Day. Brock, now 13, loves to be social, so “to be able to see people and be social—that’s heartwarming to me,” said Mandy. “And everybody accepts everybody.
“The event is so mindboggling – every year it gets better,” she said. “Every year I walk away knowing more. Even minor things like medication side effects, medication interactions – those seem small, but they are huge in our world. They can impact the whole family.”
Advocacy, awareness, education
Like many families, the Grahams are raising awareness simply by attending. “Many of the people I work with, my own patients, doctors I interact with—they know when I’m going every year and they want to know what I’ve learned when I come back,” said Mandy, who is a speech pathologist. “My patients are excited, because they know it’s changing my life and other people’s lives.”
The Levys are committed to continuing Epilepsy Awareness Day indefinitely. The event is completely volunteer driven, with no funds spent on salaries or personal expenses. The 2020 expo will have a larger exhibitor space and host more physicians and centers than in the past. Presentations are added and adjusted based on feedback from families.
“There’s a huge need for everyone to get educated,” Holder said. “Especially for children; if a child is misdiagnosed and on the wrong medication for years, it affects their entire life. They can’t get that development back. We have to get seizure control early, and if you have to travel to see another doctor, you do that. Don’t settle.”
In less than a decade, Epilepsy Awareness Day grew from a fun day at an amusement park to an educational powerhouse, attracting people from around the world in search of answers. Events such as this one fill a much-needed gap for people with epilepsy and their families. Its success highlights the need for information and the value of informal, face-to-face conversations. The event energizes people with epilepsy, their families, and physicians, creating epilepsy advocates and enhancing awareness.
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