Developmental and epileptic encephalopathies place a significant burden on patients and their families. Seizure activity can affect a person’s lifestyle and independence, including work, play, school, travel, and relationships.
Worldwide, roughly 50 million people are affected by epilepsy. In the United States, approximately 3 million adults and nearly 500,000 children are estimated to have an active diagnosis of epilepsy.1
Living with epilepsy will have a lot of ups and downs. There may be times when things are working well in life, but the next day everything takes a turn for the worse. Maybe the problem is social or related to work, or seizure related. Being equipped with tools to foresee and face these day-to-day challenges is key to living the best life possible with epilepsy.2
Epilepsy in childhood, as well as in adults with later-diagnosed DEEs, is associated with significant impairment in quality of life. Physical functioning, behavior, social interaction, mental health, memory and thought processes, and overall quality of life can all be adversely affected by epilepsy.3
In addition to determining which type of epilepsy a patient may have, their clinician must also consider elements, such as sleep, social functioning, mental health, cognition, physical functioning, behavior, adverse events, and family life, all of which are important considerations in choosing treatment plans for patients.3,4
Epilepsy is associated with multiple comorbidities, or coexisting conditions. In children, the most common comorbidity is intellectual disability, often coupled with neurodegenerative disease. Children and young adults with epilepsy are 3-6 times more likely to have developmental or psychological comorbidities compared to the general pediatric population.5 As patients grow older, depression and anxiety may arise as additional comorbidities. Unfortunately, many cases of epilepsy in adults are actually undiagnosed DEEs, with 12% to 50% of adult epilepsy patients benefiting from further diagnostic evaluation for this reason.4,6
In consideration of these facts, your clinicians will work with you to establish the best possible multidisciplinary care team. We also encourage you to consult our Reading and Resources page for websites and other materials that will help you better understand DEEs and who you can turn to for help.
All URLs accessed August 23, 2024
