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:

  • http://www.seizethefacts.com Ginny Miller

    The show was wonderfully done! Dr. Jensen’s portion was so well done showing how important research is to finding new medications. Showing the seizure was so important as well to having the public understanding. Thank you so very much for taking part in this program!

    We have needed this type of national attention for so very long. The Axelrod’s do so much. CHB is a big part in research. It is good to have this part of a prime time show that was done so well.

    Thank you so much! Education is important! So is the accurate information that was key to this program!

    Ginny Miller

  • http://www.facebook.com/ChildrensHospitalBoston?ref=search&sid=100000131990636.2537082010..1 Children’s Hospital Boston Facebook

    *comments taken from Children’s Facebook fan page*

    Sean Foley
    We suffered through about six years with our son Rory from ages6-13. He had benign rolandic childhood epilepsy. Luckily it is a type that most children outgrow, and he did. I am interested in becoming more involved. Obviously money and resources are not up to par for the percentage of people affected by this disease.

  • Kasey McFate

    My daughter Annaleigh McFate was diagnosed with epilepsy when she was 17 months old. We do not have a cause as to why she began having seizures. Anna has complex-partial seizures. A few months after she was diagnosed with epilepsy we formed a virtual walk with the National Epilepsy Walk of 2008. We were able to raise $2,800 for the National Epilepsy Foundation. Our community was very supportive and people who don’t have epilepsy or know someone who does still walked to show their support. It was great. Annaleigh is now 3 1/2 and averaging 1 seizure every 6 weeks. Her doctor has suggested she get a seizure response dog. Which has come with a whole new set of problems, which we are working out. It is very difficult to see your child having a seizure and there is nothing you can do to stop it. You feel helpless. If there is anything I can do to help people who suffer from this I will step up to the plate. I am a H.O.P.E. mentor (helping other people with epilepsy, and my family will walk every year there is an epilepsy walk to not only show support but to hopefully find a cure soon. We have also started a support group in Tupelo, MS.

  • Pingback: [Research] Pediatric Epilepsy Research - Epilepsy Forum()

  • MIchelle

    My husband and I adopted our son, whom was drug exposed, at 5 mos. old. He started experiencing absence or staring seizures when he was 1 years old. All tests have shown no cause for the seizures, which have been witnessed by family and his special ed. teacher, but not his neurologist. Our son is now 3, borderline mentally retarded, still experiencing seizures and is cognatively at a level half his age. His neurologist still will not give him a diagnosis of epilepsy although he did put him on Keppra a month ago. Is this normal for a neurologist to not believe a parent? He thinks that his “seizures” are caused by autism, however, three psychologists have told us that our son does not have autism. We are so frustrated and scared for our son. He is slipping through the cracks. Our Regional Center just dropped him from the program because his neurologist wouldn’t give a definitive diagnosis.

    • http://www.childrenshospital.org Matt Cyr

      Hi Michelle,
      I’m sorry for all the troubles you’re having. Where do you live?
      Thanks for your comment.
      Matt

  • http://feedbackmatters.blogspot.com Robin

    I believe the more exposure that this disorder gets the better. What I don’t want to see happen is for people to continue to believe that medication and surgery is the only answer. My daughter began having seizures at the age of 14. We tried conventional medical recommendations and her seizures increased to 6/mo. Side effects were unacceptable. Now a month away from being 18 she is close to being controlled. We have done this by making nutritional changes, neurofeedback, and supplementing vitamins and minerals for brain and body health.
    What I see as a fault with conventional approaches, is that the doctors that we were referred to were so specialized that they did not see the big picture, the health of the whole body. Not one was willing to move into another doctors specialty, and rarely would conference with the other. I am sure there are legal reasons for this, but it is quite maddening.
    There are some wonderful successful therapies that are being ignored because they do not have the backing of a Pharma company, or the $ to put out the type of studies that are recognized as being believable.
    My home calendar journal proves that the choices made on our duaghters behalf have made a positive improvement in the quality of her life. However, this was learned outside of mainstream medical offices.
    If there is new research I do hope they look into these directions as well.

  • http://www.seizethefacts.com Ginny Miller

    To answer the original blog questions, my son has suffered from epilepsy since he was a young child. He has been through bullying because of his epilepsy as well as misdiagnosis having his medications and diagnosis removed. He and others with epilepsy DESPERATELY need the research that Dr Jensen spoke about. His seizures are intractable or resistant to medications. He also suffers from severe depression, co-morbid to his epilepsy. We are fortunate to have been close enough to Children’s hospital for his care, but even then his treatment has been extremely challenging. He attempted suicide due to a seizure medication and circumstances of his misdiagnoses and life circumstances at age 15. We are fortunate his 2 attempts were not successful and that the Psychiatric team at CHB was so wonderful!! We did not have anything available in our state to help him for neuro or psych help. I owe my son’s life to CHB.

    We need more help for Epilepsy and have worked very hard for advocacy.

    I also was diagnosed with epilepsy a few years ago.

    3 Million Americans have epilepsy and need new medications to fight this disorder. We also need to break the stigma that surrounds this condition. Better treatments, better diagnostic methods, better understanding for the general public.

    GM

  • Jody Carhart

    My daughter, Tina, died at age 7 from epilepsy. We tried 17 anti-epileptic medicines, the vagus nerve stimulator implant, the multiple subpile transection brain surgery, and the ketogenic diet. We tried it all to save our daughter, but couldn’t. Not enough research and cures out there yet. Because of this, we lost our most precious gift. I hope they find a cure soon so other parents don’t have to go through the pain that we have to live with everyday.
    Jody Carhart

  • Ann

    Thank you so much for bringing this to light. Our 5 YO son was diagnosed with juvenile epilepsy in Sept, and has since responded very well to meds. It was a scary time for us, but luckily, we found an amazing dr – We are so blessed to live so close to world reknown physicians. It is clear just how lacking the funding is for this disorder, and how misunderstood it still is.
    To Michelle, I am so sorry to hear of you troubles in reaching a diagnosis. Have you thought of video taping his episodes? We were able to capture a few of my sons’ just before we received our diagnosis. The neuro we worked with found it helpful to see the actual event, rather than have us describe it to him. We also had luck in inducing the seizures in a clinical setting, so for us, the diagnosis was clear and easy. Best of luck, and if you aren’t finding the answers you need, don’t be afraid to advocate for your son and pursue other opinions. God bless.

  • Cheri

    Our son, age 11, has started having siezures where his face gets red, hands stiffen and shake slightly and he drools uncontrollably for 3-5 seconds, doesn’t remember it or feel it coming on.  We are having trouble finding a doctor in our area.  We are totally frustrated with medical profession.