Frances Jensen on 60 Minutes: Why funding epilepsy research is important

Last night, Frances Jensen, MD, senior associate in Neurology, was featured in a piece on 60 Minutes about the prevalence of epilepsy and the importance of funding research into its cure. Watch the piece here, then keep reading below as Jensen describes how epilepsy is often overlooked as a public health problem and how researchers like her are trying to stop it in its tracks. Also watch below as Jensen shows Katie Couric what an epilepsy looks like from a molecular perspective.

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By Frances Jensen, MD

Last night, research by myself and my team was featured on 60 Minutes in a wonderful story about the impact that epilepsy has on the people with it and the challenges of getting the public – including the agencies that fund research – to pay the disease the attention it deserves.

I was excited to be part of this story because raising awareness about epilepsy is important on several fronts. Despite this disease being the third most common brain disorder (after stroke and dementia), the public, and even some health care providers, have little knowledge about it. Epilepsy is defined as repeated seizures, and this can happen at any point in a person’s lifetime due to an inherited condition, an illness or a brain injury of any kind. Seizures are due to out-of-control brain cell activity in a part(or even the whole) brain. Medications, and in severe cases even surgery, are needed to dampen this over-activity in order to prevent more seizures.Researchers like me at Children’s Hospital Boston are working hard to understand epilepsy, which affects children much more commonly than adults. While approaching an incidence of 2 percent of the population in general, the incidence of epilepsy in infants and kids is somewhere between 5 to 7 percent. Importantly, seizures occur most frequently in infants, often due to birth trauma or a perinatal infection or injury. As the brain changes dramatically over the lifetime, the mechanism of seizures can be different in children compared to adults, and they often need different medications than adults. Seizures in infants are especially hard to control, and our team is currently performing a clinical trial to test a new medication for stopping seizures that is “custom-made” for the baby’s brain.

Second, epilepsy can take many forms, and in some cases be difficult to detect. Depending on where in the brain a seizure happens, the person might experience different problems. Seizures can be severe or mild, depending on the cause and brain area involved, and in some cases, seizures can progress from mild to severe over time. If, for example, the whole brain is taken over by a seizure, the person will lose consciousness, and might have whole-body tremors. However, if the seizure is in a small part of the brain, say the visual system, the person may have a visual hallucination. Other kinds of seizures may just look like a staring spell, or the person may have unusually strong emotions, such as fear or a sense of déjà vu.

In this video, Frances Jensen, MD, shows Katie Couric what an epilepsy looks like at a molecular level.

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Third, one major fact that people do not seem to realize is that epilepsy is not just about the seizures. More than half of people with epilepsy also suffer some kind of memory or learning disorder or a psychiatric problem, like depression or anxiety. Often, the cause of this is linked to the same one that is causing the seizures, and treating the seizures can improve these symptoms as well. We have been using the term “epilepsy spectrum disorder” recently to help people and researchers become aware of how complex a disease this can be.

Once seizures are suspected, the best approach is for a patient to go to a neurologist that specializes in seizures – an “epileptologist.” The epileptologist will not only evaluate the seizures and see where they are coming from, but also will make sure that they do not have related “hidden” problems, like memory or behavior issues. Despite our best efforts, about 20 to 30 percent of patients with severe forms of epilepsy do not improve on the medications that are currently available.  In some cases, these patients improve if they have epilepsy surgery to remove the over-active “hot spot” in their brain. This is complicated surgery, and for it to be done safely, the patient needs to be cared for in a comprehensive epilepsy center like Children’s, with doctors, surgeons, nurses and psychologists that specialize in epilepsy.

Finally, a major reason to raise awareness about epilepsy is to gain wide support for promoting more research in this disease. For such a common disease, it gets much less funding than stroke or dementia, and even gets less funding than Parkinson’s disease, which affects less than a quarter of the number of people who are affected with epilepsy. Epilepsy has lacked a “voice,” which is why it’s so important that David and Susan Axelrod share their daughter, Lauren’s, story in such a public way, as they did last night on 60 Minutes. There is much research to be done to find new cures that not only stop the seizures but prevent epilepsy from starting or progressing once it has started. In addition, more research is needed on how to prevent the “non-seizure” parts of this disease that are so common, like memory and attention problems and depression. Given the recent major advances in basic research as to how our brains work, and the new technologies and devices that are being developed for diagnosis and treatment, the cure for epilepsy is really within our sight!

Do you or does your child live with epilepsy? Can you relate to the challenges faced by the Axelrods, moms struggling to maintain normal lives or wounded soldiers trying to return to the lives they lived before being injured at war? How does epilepsy impact your day-to-day life? What hopes do you have for research like Jensen’s?

Here are some additional resources related to epilepsy treatment and research: