As a neurologist with specialty training in this field, I have been devoted to helping the plight of individuals with epilepsy find better treatments, advocate for better management and to illuminate some of the terrible misinformation that is spread about this condition. In March 2012, the Institute of Medicine took up the topic of epilepsy and how it is handled in the United States (U.S.). As a member of that panel, I was able to hear important testimony from public, private and government institutions about how epilepsy is managed in the U.S. and some of the major problems that affect its care and the people who have it. The following are several important items that may help to clarify one’s knowledge about epilepsy and show that this is truly a common condition.
1. Epilepsy is the condition of having repeated, unprovoked seizures, whereas a seizure is an abnormal electrical discharge of the brain which then results in an individual losing consciousness or having a change in their neurological function. There are several types of seizures and not all are dramatic in their presentation, though they are often depicted in movies and television as a convulsion. Some seizures manifest by one simply losing focus, but to a bystander, it may seem as daydreaming, wandering or a tremor. Therefore, not all seizures are very dramatic in their presentations.
2. Epilepsy is very common. According to the CDC, one in 26 people in the U.S. will develop epilepsy at some point in their lifetime. If you think about it, that means two persons on every bus or two people in every subway car will have epilepsy. There are 150,000 new cases of epilepsy diagnosed in the United States annually; 2.2 million people in the U.S. and more than 65 million people worldwide have the condition.
3. Children and older adults are the fastest-growing segments of the population with new cases of epilepsy; however, the reason that they have epilepsy varies dramatically. In children, we see an overabundance of genetic and infectious causes of seizures. For older adults, stroke and Alzheimer’s disease seem to be the common cause of epilepsy and seizures in this population.
4. There are numerous causes of seizures and epilepsy. Stroke, head trauma and tumors are common causes of seizures in the U.S., yet the number one cause of seizures outside of the U.S. is an infection which is completely preventable by simply washing one’s hands. Neurocysticercosis– caused by the Taenia solium tapeworm— is one of the most common causes of epilepsy in the world and an increasing cause of seizures in the U.S. Other preventable causes of epilepsy are head trauma from car accidents, violence or the consequences of military intervention.
5. Epilepsy is not a benign condition and can result in death. The number of people with epilepsy who die of sudden unexpected death in epilepsy (SUDEP) varies from one of every 10,000 newly diagnosed to nine of every 1,000 candidates for epilepsy surgery.
6. For many people with epilepsy, seizures can be effectively reduced or eliminated by medication, surgery, devices and dietary or other therapies; however, referral to epilepsy centers for surgery can take 15 years or more. In the Latino population, there is a considerable misinformation and lack of information; oftentimes that lack of access does not translate into meaningful care. There are 26 different drugs approved for treatment in the U.S. for epilepsy. Moreover there is a pacemaker like device known as the vagus nerve stimulator, a diet- ketogenic or modified Atkins, and numerous surgeries. These effective treatments are available for many types of epilepsies; however, access and referrals to these treatments fall short.
7. There is considerable stigma associated with epilepsy that sometimes overwhelms the condition itself. The word” epilepsy” is considered stigmatizing in its own right. The long history of epilepsy is full of examples of discrimination and secrecy due to misinformation and lack of understanding by the general public. This stigma can have a detrimental effect on people with epilepsy and continued and sustained efforts are needed to raise public awareness and convey what epilepsy is and what it is not, as well as the basic message that this is an exceedingly common condition.
8. There are significant quality of life issues associated with epilepsy and one of the most significant is driving. Every state in the U.S. has a law that dictates whether someone with epilepsy can or cannot drive and the length of time they need to be seizure free for them to drive. In six of these states, the law has mandatory reporting by the physician of all patients with epilepsy to a medical board. Individuals need to be aware of these laws as there are, in some cases, criminal consequences for both physician and patients for their lack of awareness associated with it.
9. Epilepsy is more than just seizures as it often has other accompanying conditions associated with it. Oftentimes, poor memory, mood issues, depression and anxiety walk hand in hand with issues associated with epilepsy and need to be managed and thought of when caring for the individual with epilepsy.
10. Sadly, many health professionals need to be better informed about epilepsy. Only 20 percent of U.S. medical schools require training in neurology…and epilepsy and how to treat it. Improvements in epilepsy care can only be made if the quality and quantity of education about epilepsy for health care professionals are improved dramatically at undergraduate and graduate levels of lifelong learning processes. In addition, more educational efforts for patients with epilepsy and their families is needed.
It is only with a concerted effort to illuminate epilepsy and talk about the condition that one will hopefully empower individuals with knowledge so as to improve quality of life.
Dr. Joseph Sirven is a first-generation Cuban-American. He is Professor and Chairman of the Department of Neurology and was past Director of Education for Mayo Clinic Arizona. He is editor-in-chief of epilepsy.com and has served U.S. and global governmental agencies including the Institute of Medicine, NASA, FAA, NIH and CDC.