Epilepsy: A Fight For The Cure

Katie Couric Reports On The Movement To Raise Awareness And Research Funds For This Disease

This story was originally published on Oct. 25, 2009. It was updated on June 24, 2010.

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.

As we reported last October, 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 29 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.

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