Epilepsy Isn’t As Rare As Many Might Think — And Cases Are Increasing

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An estimated 3 million people and nearly half a million children have epilepsy across the US, a new report from the Centers for Disease Control and Prevention found. That equates to approximately 1.2% of the US population, an increase since the last assessment of epilepsy prevalence in the US.

“Epilepsy poses substantial individual and societal burdens that require heightened public health action,” wrote Matthew M. Zack MD and Rosemarie Kobau, MPH, at the Centers for Disease Control and Prevention, the Aug. 11 Morbidity and Mortality Weekly Report. “Persons with epilepsy often have multiple co-occurring conditions (e.g., stroke, heart disease, depression, or developmental delay) that complicate their epilepsy management, impair life goals, and contribute to early mortality.”

Epilepsy is a neurological disorder characterized by repeated seizures. Seizures occurs when the brain’s electrical activity behaves irregularly and leads to a variety of possible physical symptoms. Not all seizures look the same, and some may not be easily detectable to others. They can involve temporary loss of consciousness or awareness or a particular sense, involuntary muscular jerks, altered or rapid eye movement, twitching or other symptoms.

Few recent and reliable national estimates on the prevalence of epilepsy exist, and most states have no estimates on epilepsy prevalence, making it more difficult for public health and advocacy groups to address the issue. For this study, the CDC researchers analyzed data from the 2015 National Health Interview Survey for adults, the 2011-2012 National Survey of Children’s Health and the 2015 Current Population Survey data.

Researchers classified adults with epilepsy if they had experience at least once seizure in the past year and/or they had a doctor’s diagnosis of the condition and were taking medication to manage it. Children similarly were included in the estimates if their parents reported that their child received a physician’s diagnosis of epilepsy or a seizure disorder.

The combined data sets revealed that 1.2% of people in the US have active epilepsy. The prevalence is even higher, at 3.4%, among adults ages 20-64 who receive Medicaid. These estimates took into account differences in age or income that could have influenced prevalence of the disorder.

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Previous estimates of epilepsy prevalence had been 1% of the US population using data from 2010 and 2013, or 0.8% of the population using data from 2007-2011. The authors noted that some of the increase in overall number of cases is likely linked to increased population growth, especially since the estimates for individual states closely follows population trends in those states.

Another possible contributor for the increase is better identification of the disorder.

“We probably are better educating families and the lay population about what would be the symptoms of epilepsy, such as loss of consciousness or convulsion,” said James Riviello, MD, a pediatric neurologist at Texas Children’s Hospital in Houston. He also noted substantial improvements in technology that allow longer term, more precise EEG testing (used to track the brain’s electrical activity).

In the past, short-term EEGs, occurring over one or a few hours, only picked up abnormal electrical activity in the brain if the person experienced a seizure during the testing session. “Now we have the capability of doing days on end, long-term monitoring or at home with an ambulatory EEG at home,” Riviello said.

Some people with epilepsy might also be more willing to share their diagnosis if they perceive decreased stigma about it, the CDC authors wrote. At the same time, concern about stigma or other consequences of disclosure, such as losing a driver’s license, may also lead to some underreporting. The data sets also excluded adults in institutions, so the authors’ estimates may be underestimated.

Epilepsy is among the most expensive and most common chronic conditions in children and teens that has a significant negative impact on quality of life, health and academics.

“Children with seizures are more likely to live in poverty, and their parents more frequently report food insecurity,” wrote the CDC authors. “Direct yearly health care costs per person with epilepsy ranged from $10,192 to $47,862 (2013 U.S. dollars) and were higher for persons with uncontrolled seizures.”

This study only calculated the numbers of people who have or don’t have any type of epilepsy and does not include population-wide data on the severity of the condition, seizure types or causes of the condition. Some individuals do not require long-term medication if they rarely have seizures, Riviello said.

“We’ve gotten much more lenient with not putting people on daily medications but instead using rescue medications if the seizures are not frequent,” he said. Anti-epileptic medications can have a variety of side effects, and most are associated with an increased risk of birth defects if women take them during pregnancy.

“We try to not treat if possible,” Riviello said. “But if someone’s having recurrent seizures, we’re going to put them on anti-seizures medications.” Not treating epilepsy can lead to worsened cognitive outcomes and behavioral problems, he said.

Currently, if a person’s seizures aren’t controlled by anti-seizure medications, their only option may be brain surgery. But not all candidates are appropriate for surgery, and surgery is not always effective.

Scientists hope that a better understanding of the causes of different types of epilepsy will lead to precision medicine treatments—drugs designed to address a person’s specific genetic or other physiological cause for the disorder. The causes of epilepsy vary greatly, and not all of them are understood. Brain trauma, temporary lack of oxygen from a cardiac arrest, genetic mutations, inherited genes and underlying metabolic diseases can all play a role in epilepsy disorders, Riviello said.

“If we find a cause of an epilepsy and we know it’s a gene abnormality, we might be able to do a targeted therapy for that abnormality as opposed to meds that are more like shotgun therapy,” Riviello said. “As we learn more about the genetics of epilepsy, especially the cases that occur out of the blue, then we’re hopefully going to become better at picking the right medication for each person.”

My new book, Vaccination Investigation, is now available for purchase, and The Informed Parent, co-authored with Emily Willingham, remains available. Find me on Twitter here.

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