Disneyland expo offers families with epilepsy support, answers, and hope
By Tara Haelle
After nearly 2 decades of seizures, the last thing John Bowen thought would eventually cure his epilepsy was a trip to Disneyland. Yet, in a way, that’s pretty much what happened.
Since May 1999, when Bowen had his first seizure while working as a guard at a jail, he had taken drug after drug and seen doctor after doctor for his seizures. As his wife Katie described it, John was always falling two steps back for every step forward in his clinical progress.
Primary care physicians often don’t know how to treat epilepsy that does not respond to first-line treatments, and it can take 10-15 years of uncontrolled seizures before many patients see an epilepsy specialist, explained Edward H. Bertram III, MD , information officer for the International League Against Epilepsy.
“Most people in the medical community don’t view epilepsy as a big problem, but more as an inconvenience,” Dr. Bertram said. “It just doesn’t garner the attention that it should, and people are struggling to find solutions.”
But the Bowens were seeing specialists – and still couldn’t find the solutions John needed. In the first 3 years after his first seizure, John underwent brain surgery twice, first to remove a brain tumor and then to remove damaged tissue in his right temporal lobe. When he continued to have seizures, he began taking Dilantin (phenytoin). It worked for 2.5 years until a grand mal seizure hospitalized him for 4 days. Things continued downhill from there.
“The best we’re ever going to be able to do for your husband is he’ll have one seizure every 6 months,” a neurologist told Katie. “We’ll consider that controlled.” But even that turned out to be optimistic. Even after installation of a vagus nerve stimulation unit, John was having one seizure per month. Every time he tried a new drug or his Dilantin dose was increased, the seizures eventually returned. At one point, John took such a high dose he had Dilantin toxicity. All the while, doctors told the couple that John’s case wasn’t operable, that it was just too risky to remove more of his brain. By November 2018, the couple had little reason to hope for a miracle, but they had heard of the Disneyland expo and decided to try it.
John and Katie Bowen
Brad and Candy Levy
The first Disneyland Epilepsy Awareness Day grew out of a dinner between organizers Brad and Candy Levy and their daughter’s surgeon at the University of California, Los Angeles, Gary W. Mathern, MD. Their daughter had been seizure free for 3 years, and Dr. Mathern suggested they create a social awareness campaign to bring families together in a “feel-good event” for epilepsy. The Levys followed his advice: 175 people showed up at the first Disneyland event in 2013.
“It was strictly a day at the park,” Mr. Levy said. “We gave out purple shirts, people cried, they hugged, they took pictures, they went home.”
But at the end of that day, pediatric neurologist Deborah Holder, MD, from Children’s Hospital Los Angeles, found Mr. Levy and told him he had missed a huge opportunity. He needed to educate people and give them a takeaway, Dr. Holder said. She offered funding from her nonprofit to sponsor an education expo next time.
The next year, 1,000 people came and heard talks from six doctors from five hospitals. Since then, the expo has partnered with the International League Against Epilepsy and grown more than fivefold, with 5,600 attendees, more than 100 physicians, and 30 national epilepsy centers and hospitals attending last year. Levy expects an even bigger crowd this November 2-4, 2020.
“We’ve really fine-tuned the expo with the major goal being to connect people to better everything – better resources, better doctors, better advocates, better care in general,” Mr. Levy said. He’s become an expert on experts: He knows neurologists and surgeons across the nation and what they specialize in, from genetics to vagus nerve stimulation, ablation, and robotic surgery.
Last year’s event featured 64 talks that took one of two forms: a lecture forum for large crowds to hear about a specific topic or the more intimate “Ask the Expert” gatherings that resembled library story time. A physician, the expert, sits on a purple velvet throne with coffee, a dry erase board, and a model brain, answering questions for 40 minutes from about 60 people sitting in a semicircle around him. These gatherings benefit doctors as well as patients, Dr. Bertram said.
Dr. Deborah Holder
For families desperately seeking information about epilepsy, a few days at Disneyland means more than rides and visiting Mickey Mouse. It’s a chance to meet others searching for the same answers – and often finding them.
“It’s also important to us because we hear where the system is not helping,” he said. “Getting a better sense of what the real issues are that patients are facing is really important.”
More than anything, attendees are seeking information, he said. “Patients sometimes look around for a long time before they get the information they want. Coming to a place like the Disneyland event is where they begin to find that information.”
It was there that the Bowens met Sumeet Vadera, MD, a neurosurgeon at the University of California, Irvine. After Dr. Vadera’s talk on what a brain surgery candidate looked like, Katie told him that John had repeatedly been told he wasn’t a surgery candidate. “There’s more testing that could be done,” Dr. Vadera said, handing them his card.
Once home, Katie sent Dr. Vadera all John’s records. The couple flew to Irvine in December and January for testing and soon discovered that John was actually flatlining during some of his seizures – for up to 20 seconds. He was at high risk for sudden unexpected death in epilepsy.
“If he continues to have seizures, he’s going to die,” the doctors told Katie. They installed a pacemaker in him and wouldn’t discharge him. “I have to go in and remove your husband’s right temporal lobe, the entire section,” Dr. Vadera told Katie. “If I don’t, we don’t know how long your husband is going to survive.”
John underwent the surgery in March 2018. He hasn’t had a seizure since.
John’s case was remarkable, but even for those whose attendance doesn’t lead to dramatic cures, the event allows families to hear about others’ experiences and how they’re dealing with epilepsy. “That’s probably the great unadvertised thing about coming,” Dr. Bertram said.
“When you come to a place like the Disneyland expo, families are meeting other people in the same boat,” he said. “To know that other people are dealing with the same thing you are is a huge. It tells you that you’re not alone, and I think that’s extremely important.”
The event does not involve fundraising and is instead fully self-funded with revenue from pharmaceutical companies that pay for exhibit spaces. Medical providers, hospitals, nonprofit support groups, and families do not pay any registration fees.
In fact, three foundations offer sponsorships to help families who cannot afford the travel expenses. The Chelsea Hutchison Foundation, Danny Did Foundation, and Purple Peace Foundation sponsored more than 70 total families last year. This year, Mr. Levy said there will be an opportunity for families to sponsor other families as well, and he expects 100 sponsored families to have the opportunity to attend.
As the event grows, Mr. Levy is constantly seeking ways to improve the event. He’s currently focusing on three goals. The first is growing a consortium of rare epilepsy support groups so that attendees who have struggled to find information about their condition elsewhere can finally find others with the same rare condition. This year, 30 rare epilepsy groups will attend, up from 16 last year.
The second goal is recruiting more pharmacists to the highly popular “Ask a Pharmacist” booth that drew big crowds last year. And last, the event has partnered with the Charlie Foundation to bring experts who will explain the ketogenic diet. With the misinformation that has accompanied popular interest in the diet nationally, Mr. Levy wants to ensure families can get accurate, evidence-based information.
When the Bowens returned to the Disneyland event in 2019, they were practically celebrities. John’s story had become the stuff of legend, infusing other attendees with hope that they too might actually find the help they needed.
“At 18 or 19 years, we easily could have given up hope. We were grasping at straws. We were willing to try anything,” Katie said. “Just meeting the right doctor at the right time has literally changed John’s life. If it wasn’t for them, he could be dead.”
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