PHILADELPHIA — January 11, 2022 — A new Health Union survey reveals people living with epilepsy who experience focal onset seizures often have a more complex treatment journey than those who have never experienced focal seizures, including less treatment control, a larger array of treatment options used and more negative quality of life. The inaugural Epilepsy In America survey illuminates the perspectives and experiences of people living with epilepsy.
These findings also support and fuel content and engagement for the recent launch of EpilepsyDisease.com, Health Union’s 38th condition-specific online health community.
Epilepsy is a condition in which nerve activity in the brain is disturbed, which causes seizures. According to the Epilepsy Foundation, the cause of epileptic seizures is often unknown, but they may occur due to a genetic disorder, be acquired from a brain injury like trauma or a stroke, or stem from a number of brain structure, immune or metabolic causes.
Seizures are typically categorized by their onset, or where they begin in the brain, with generalized onset and focal onset seizures being the two major types. Generalized onset seizures occur when there is widespread seizure activity in both hemispheres of the brain; typical subsets include tonic-clonic (formerly grand mal) and absence (formerly petit mal) seizures. Focal seizures happen when seizure activity begins in one area or group of cells in one hemisphere of the brain; typical subsets include focal seizures with awareness (formerly simple partial) and focal seizures with impaired awareness (formerly complex partial).
Among Epilepsy In America survey respondents, 64% have had focal seizures and 80% have experienced generalized seizures, while 52% have experienced both. Survey findings reveal that respondents who have experienced focal seizures, which has been the focus of much clinical research in recent years, have significantly different patient journeys than the 36% who have never experienced focal seizures, including treatment experience and quality of life.
Findings reveal that people with epilepsy who experience focal seizures leverage – whether out of need or by choice – a larger array of treatment options. Respondents living with focal seizures were more likely than those who aren’t to currently be using prescription medications. They were also more likely to use various alternative therapies, including exercise or yoga, meditation and music therapy.
In general, finding treatments that work can be challenging for people experiencing focal onset seizures. Occasionally, surgery becomes a possibility for people living with focal onset seizures. This was the case for EpilepsyDisease.com patient advocate Stacia Kalinoski, who was diagnosed with temporal lobe epilepsy with secondarily generalized seizures.
“Once I got to a therapeutic level on my medications, the tonic-clonic seizures mostly ended, but multiple doses of three different anti-epileptic drugs couldn’t control my temporal lobe seizures,” Kalinoski said. “I was frustrated but tried hard not to lose hope. A focal seizure ultimately ended my career, but it led me to brain surgery, which I’m immensely grateful to have had done.”
Three in 10 respondents who have experienced focal seizures indicated their epilepsy is under control with their current treatment plan, compared to half of respondents who have never experienced them. In fact, a quarter of respondents who have had focal seizures said they have gone at least two years seizure-free at some point; meanwhile, nearly half of respondents who haven’t experienced focal seizures have ever gone at least two years without a seizure.