Breaking the Myths Surrounding Epilepsy
Advocacy To many Americans, epilepsy is a mystery — but for approximately 2.5 million in the U.S., the condition is all too real.
Epilepsy can affect people of all ages and its impact may also vary from mild to severe, disabling to life-threatening. Epilepsy is a neurological condition that consists of episodes of brain dysfunction resulting in a wide range of physical and behavioral changes. While epilepsy can be the result of various brain disorders — including head trauma, brain tumors, brain malformations, infections, stroke and systemic illnesses — most cases of epilepsy have no identifiable cause the condition is now widely believed to be genetic.
People with epilepsy experience repeated and sporadic seizures which generally manifest as a repeated jerking and stiffening of limbs, the face and/or the full body. Seizures can also involve loss of consciousness and falling to the ground. They can come on suddenly and vary between brief or prolonged episodes, rarely or frequently depending on the patient.
People with epilepsy may face challenges in seizure control, managing side effects of seizure treatment and maintaining a good quality of life between seizures. Sufferers may also experience lapses of attention, periods of confusion or subtle changes in behavior as a result of the condition.
The cost of epilepsy
Those with limited seizure control are more likely to have depression and anxiety as a result. These people have limited work opportunities, cannot safely drive and have an impaired quality of life overall. Those with epilepsy may also face discrimination in school or the workplace regardless of the degree of seizure control.
"People with epilepsy may face challenges in seizure control, managing side effects of seizure treatment and maintaining a good quality of life between seizures."
In addition to the emotional and physical costs of the disorder, there is also a significant monetary cost to the disease. Epilepsy represents a loss of about $15.5 billion a year in direct medical costs and reduced productivity in the United States alone. Options for health insurance are typically limited, making the current debate about healthcare availability particularly relevant to the epilepsy community. Increased research funding is also critical to further understanding the causes of epilepsy, seeking new treatments and improving the lives of those with epilepsy in general.
Hope in treatment
When possible, people with epilepsy should receive care from health providers with specialized training. If problems with seizure control emerge, they should be treated at specially designated “comprehensive epilepsy centers” for optimal results. About two-thirds of people with epilepsy are able to function normally, their condition controlled by medication. Others benefit from surgical intervention, including procedures involving implantable devices. Many struggle with uncontrollable seizures, side effects from treatment or both.
Needs change over a lifetime so individualized care is important, particularly for special populations such as infants, children, teens, women of reproductive age, those with epilepsy not controlled by standard treatments, those who suffer from mental illness and the elderly. Personalized, holistic care not only effectively treats the condition, but also addresses quality of life issues for those with epilepsy to help them live full, active lives.