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Susan Axelrod's battle to save her daughter

    Susan Axelrod is a fighter. When her daughter Lauren, now 29, was diagnosed with epilepsy, she didn’t just try to control the seizures, she decided to work to eradicate the disease.
    Epilepsy affects over 3 million Americans of all ages—more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.  
    Approximately 500 new cases of epilepsy are diagnosed every day in the United States with epilepsy impacting 50,000,000 people worldwide. Returning veterans with traumatic brain injury are at high risk of developing epilepsy.
    The Chicago-based Axelrod, whose husband is political consultant David Axelrod, senior advisor to the Obama administration, worked with other mothers and formed CURE, Citizens United for Research in Epilepsy, a volunteer-based nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation wrought by this disease.
Axelrod took time to talk to Chicago Life about epilepsy and CURE.

Can you tell us the process of what you went through from the time your daughter Lauren was diagnosed with a seizure disorder to the founding of CURE?
    Lauren was seven months old when out of the blue she started having seizures. We rushed her to the emergency room and she was hospitalized for a whole month because nothing stopped the seizures. By the time we went home she was on several medications, and still having six seizures a day. That was our very unwelcome introduction to epilepsy. And it’s interesting that looking back, the word “epilepsy” was never used. It wasn’t until three years later when I was looking at an EEG report on Lauren that I saw the word epilepsy—we had been told she had an Idiopathic Seizure Disorder. Keep in mind this was before the Internet. We were constantly asking, “What’s causing this?” and they would say you don’t want to know because the known causes can be worse than what we don’t know. But I am a believer that information is power. Without the knowledge about what is causing epilepsy, we will never come up with answers to this age-old problem.

After you learned her diagnosis, what happened then?
    We went through the next 18 years fighting the seizures. We’d start a new drug and be seizure-free for sometimes up to three months and then they would start up again. Always clusters of seizures that would last for days. We tried 20 different types of drugs. We tried the Ketogenic Diet, which didn’t work—though statistically in some cases it can be very therapeutic. Vagal nerve stimulation—that didn’t work. We went through several pre-surgical evaluations, and began to fear that we had exhausted everything and were going to lose her. Each cluster of seizures was life threatening. When she was 19, she was hospitalized again because her seizures were so unrelenting. There was a new drug that had just been approved by the FDA but there was a lag time in getting it to market. I was able to get some samples of it—it’s called Keppra. We gave Lauren one pill, which wasn’t even a therapeutic dose, and the seizures began to subside. It has now been over ten years since she has had a seizure. That drug, for reasons unknown to us, was her magic bullet. However, for many other patients like Lauren, sadly, it doesn’t work.

For people reading this, do you have a simple way of defining epilepsy?
    Epilepsy is two or more seizures that are not brought on by something like a fever, a toxin, or an infection. A seizure is an abnormal electrical discharge in the brain, most often of unknown origin.

I think this may surprise some people but you say that many seizures can’t be controlled with medication.
    Yes, the problem is that we have a number of new anti-seizure medications on the market but we still haven’t made a dent in the number of people whose seizures can be controlled. Up to 40% of the epileptic population doesn’t respond to drugs. That statistic hasn’t changed.

Does having seizures cause lasting effects?
    When Lauren was having seizures—especially as a baby—we would watch her turn blue around the mouth and we would ask the doctors about brain damage. They would always say no, but now we know differently. Particularly when seizures are unrelenting, severe, and begin under the age of two, they can cause life-long disability. Each and every seizure has the potential to damage a brain or end a life.

So tell us about why you created CURE?
    CURE was the power of mothers—myself and other moms who were struggling to get our kids’ seizures under control. We met and asked why we can’t do something which seems to be so simple as stopping a seizure. We looked at the federal research dollars being spent and found epilepsy was definitely not a priority. The incidence of epilepsy is the same as breast cancer and the number of deaths is pretty much the same too, which is a staggering figure. As parents we were watching our kids deteriorate. And we would ask, what is it then that we could do?

And what are CURE’s goals?
    Ultimately, we want a world without epilepsy and seizures. We can only achieve this through research. A critical step to doing this though is to keep getting the word out that seizures and epilepsy are not benign. So many new people are joining this cause, and I think it’s great that we’re unleashing their stories and giving them comfort in talking about their experiences with epilepsy. It’s also been wonderful to see patients and families come together with scientists to advance this cause.

How can people help?
    CURE has a lot of ways to get involved. Some of them are to share your story with friends and raise dollars for research by creating your own page on our website, plan an event to raise dollars for research, make a contribution—every single dollar counts, and brings us closer to a cure. With help, we will raise awareness and much-needed research dollars, moving us one step closer to a future without seizures and epilepsy.

For more information, visit www.CUREepilepsy.org

Published: December 14, 2010
Issue: 2010 Philanthropy Issue