Epilepsy: A Fight For The Cure

As President Obama's senior advisor, David Axelrod is accustomed to fighting battles in the rough and tumble world of politics. But he and his wife Susan have been face to face with another very personal adversary for the last 28 years: that's when their oldest child, Lauren, was diagnosed with epilepsy.

Lauren Axelrod is one of nearly three million Americans living with epilepsy - more than Parkinson's, multiple sclerosis and cerebral palsy combined. And one third of those with epilepsy don't respond to treatment.

Faced with few medical options, the Axelrods are part of a movement that has tried to jumpstart medical research in a fight for a cure and are finally beginning to unravel the mysteries of a disease that can strike and kill at any moment.

CDC: Epilepsy
CDC: Frequently Asked Questions
CURE: Citizens United for Research in Epilepsy

"Epilepsy is like terrorism of the brain. You don't know when it's going to strike, where you're going to be," David Axelrod told correspondent Katie Couric.

The Axelrods knew nothing about epilepsy until one morning Susan found their seven month old daughter Lauren lying in her crib, limp and blue.

"I thought that she had died. And I picked her up, and she immediately went into a seizure. Now, I had never seen a seizure before in my life, and I didn't know that that's what it was, and I watched, you know, one arm go up, and her body stiffen, and her eyes rolled back, and she was frothing at the mouth. Your classic description of a seizure," Susan Axelrod remembered.

A seizure is caused by a sudden, out of control burst of electrical activity in the brain. Some children grow out of it; others can control it with medication.

But for Lauren, nothing worked. As she grew older, she continued to have seizures, sometimes as many as 25 a day.

"You've written, I know, Susan very eloquently about this, but Lauren used to scream, 'Mommy, make it stop, make it stop,'" Couric remarked.

"There's nothing worse than having your child cognizant enough to know what's going on, and know what's happening, and begging you to help, and you can't do anything," Susan Axelrod said.

Lauren is now 28 years old. Her brain was damaged by the severity and frequency of her seizures and she's living at the Misericordia Home for the developmentally disabled in Chicago.

Asked if she remembers what it felt like when she had a seizure, Lauren Axelrod told Couric, "It felt like it was really scary when I had them."

"Like what? Can you describe it?" Couric asked.

"Like that I was feeling like I was going to fall down when I had them," Lauren Axelrod explained.

"The other half of the story isn't just what happened during the seizures, but between the seizures. Because the medications and the treatments were so hard, and they impacted on her personality, and they impacted on her cognition, they impacted on her ability to walk," Lauren's dad remembered.

By the time Lauren was 18, they had tried 23 different medications and an unsuccessful brain surgery.

Nothing worked, and the Axelrods were stunned to realize how little research and money were dedicated to finding a cure. Epilepsy strikes and kills about as many people each year as breast cancer, which gets five times more federal funding.

Susan and two other mothers started a non-profit called CURE to raise awareness and fund innovative research.

"Why can't they stop a seizure?" Susan Axelrod asked. "I mean, this is a disease that's been known since Biblical times. And it just seemed the research, and the ability to treat and control is so primitive."

"Why? As you say, it's been around forever. It affects so many people," Couric asked.

"You know, it was viewed - even into this century - widely as sort of demonic possession and so on. You know, it's so frightening to see someone have a seizure. And it makes people uncomfortable," David Axelrod said.

Some of CURE's money goes to the lab of Dr. Frances Jensen at Children's Hospital in Boston. And she's making significant progress. Her team is developing the first medicines designed specifically for newborns, whose growing brains are particularly susceptible to seizures.

"Some of the epilepsies that affect babies, they don't respond to adult drugs. So the seizures don't get corrected. The brain development in the more severe cases gets affected," Dr. Jensen explained.

Jensen's method for developing new drugs involves actual epileptic brain tissue, which she can keep alive for several hours, enough time for her to experiment with different medications.

Jensen is testing a new anti-convulsant drug and, at least in the lab, it worked.

"We can see that we've stopped the brain activity in this case," Jensen explained, showing Couric an on-screen read-out of brain activity.

Asked if this is a "Eureka" drug, Jensen said, "Well, it is a prototype drug. So, in this case, it worked."

But no one medication will ever treat the more than 25 different types of seizures, which are diagnosed by recording brain activity. If a seizure is in the part of the brain responsible for motor skills, it can cause a person to jerk uncontrollably.

In another region, it can be as subtle as a brief starring spell. Because of the range of symptoms, Jensen says epilepsy is often misdiagnosed.

"The people that have staring spells could be mislabeled as just not paying attention or attention issues. Some people later in life have seizures and it gets mistaken for dementia," she explained.

Asked if it makes her furious that more attention hasn't been paid to this, Jensen told Couric, "Yes. People don't realize that it's happening to two in 100 people, and even more than that, in five or six out of every 100 children have had some form of epilepsy."

Some of the people most at risk are those who have sustained head injuries, which is why the U.S. military is also focusing on epilepsy.

There are thousands of veterans with traumatic brain injuries from fighting in Iraq and Afghanistan, who we know from other wars, have up to a 50 percent chance of developing epilepsy.

Captain Pat Horan was severely wounded two years ago while on patrol in Baghdad. "I got shot right in the head," he said.

He lost his ability to read, write, walk and even speak. "I lost the whole thing," Capt. Horan told Couric.

Horan and his wife Patty say his seizures, which started four months after his injury, have been the hardest part of his recovery at Walter Reed Medical Center. Each seizure would wipe out the progress he was making and he'd have to start all over again.

"Do you wonder, Patty, how much more Pat might have progressed if he didn't have epilepsy?" Couric asked.

"Yeah, I do," she replied. "They say most of your healing is gonna be done in the first two years. So, a year and a half of that, he had seizures, you know, every month, every two months."

"You have all these young people coming back. And they are very, very much at risk. The statistics from Vietnam reflected a high percentage of those with penetrating brain injuries developed epilepsy, you know, five, seven, ten years later," David Axelrod explained.

The military is already treating soldiers with severe brain injuries in the field with anti-seizure medications to try to prevent seizures during the early stages of recovery.

At 29 sites across the country, another experimental treatment is underway, using a pulse of electricity in the brain to stop a seizure in its tracks. Twenty-six-year-old Monica Lovelace is part of the clinical trial going on at California Pacific Medical Center in San Francisco.

Lovelace was diagnosed with epilepsy when she was five years old after contracting meningitis. She and her husband Ben have two young children, but her seizures make it hard for her to take care of them.

Asked why she decided to get this experimental procedure, Lovelace told Couric, "Absolutely for my kids. Absolutely. I wanted to be able to walk my kids to school. If I'm walking them to school and I have a seizure, are they going to walk into the street?"

She is getting a device implanted in her brain that will detect the beginning of a seizure and give her a pulse of electrical stimulation to make it stop - like a pacemaker.

Dr. Peter Weber, a neurosurgeon, uses a computer to calculate the safest route to implant electrodes in her brain. "The wires come from the back forward deep inside the brain. That's the way they look from the front on view," he explained.

Implanted in the skull, the NeuroPace device is smaller than a cell phone. When it is turned on, it immediately detects Lovelace's abnormal brain activity.

"These are abnormal discharges that lead to seizures," Dr. Weber explained.

Couric followed up with Monica Lovelace three months after the device was implanted.

"Now that you have this device in your brain, what happens when you feel a seizure's coming on? Can you explain it?" Couric asked.

"It doesn't come on. Yeah, it doesn't come on," she said.

Lovelace still gets the familiar sensation that she's about to have a seizure, but now it usually stops. She showed 60 Minutes how she wirelessly downloads her brain waves, using a handheld scanning device that looks somewhat similar to a phone receiver.

The information is sent by computer to her doctor, who then fine-tunes the stimulation. While the device is still in the early stages, a preliminary study showed it helped 50 percent of people with seizures in the same region of the brain as Lovelace's.

"It's kinda neat, because me and my husband were talking about all the different possibilities of what I can do now. Like, you know, maybe getting a job," Lovelace said.

After 18 years of trial and error, Lauren Axelrod was given a newly approved medication that finally controlled her seizures. At her home in Chicago, she is becoming more independent and making friends.

Her father hung one of her paintings above his desk at the White House after he moved to Washington last year.

"How torn do you feel having Lauren here?" Couric asked.

"It's been hard to explain to her," David Axelrod replied. "She doesn't understand why. She asks all the time, 'Why does Barak Obama need so much help.'"

He recently surprised her with an unplanned visit. While the Axelrods are grateful for how far their daughter has come, they are committed to helping other families intervene sooner than they could for Lauren.

"Do you ever look at her and kind of think, 'Gee, what if? What would she be doing now?'" Couric asked.

"Too often," Susan Axelrod said. "And this is what happens. It's painful."

"God knows what she could've been. But that's a treacherous place to go. You know, there was a time when we have given our right arm for just a week of good days. And now, she has them consistently. So, you know, that's a big victory," David Axelrod added.

Produced by Kyra Darnton