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Centers for Disease Control and Prevention Managing Epilepsy Well Network

2010; Elsevier BV; Volume: 19; Issue: 3 Linguagem: Inglês

10.1016/j.yebeh.2010.08.016

1525-5069

Rosemarie Kobau, Patricia Price, H.W. Giles, Page B. Pennell, Eric R. Hargis,

Adolescent and Pediatric Healthcare

Epilepsy can be a life-altering chronic condition for many people with this disorder. The primary symptom of epilepsy—seizures—can occur unpredictably, despite diligent medication adherence, and can result in a number of negative consequences, such as disruptions at work or school, loss of employment, loss of driving privileges and independence, and personal embarrassment. The underlying pathophysiology of epilepsy and its treatments can result in cognitive difficulties that can impact personal relationships and daily activities. When people with epilepsy internalize these challenges and the ambivalence or discomfort that the general public conveys about epilepsy, this adds to feelings of social isolation, dissatisfaction with life, and depression. Many find that just getting by every day is difficult, whereas for others, planning for the future is downright discouraging. “If you don't feel like you're in control of your life, you're going to have issues. And when you're not in control of your body, that really magnifies everything.... There's nothing I can do. I can't work. I can't ride the bus. I shouldn't cook.” This comment from a participant in an epilepsy study, captured by University of Michigan researchers involved with the Centers for Disease Control and Prevention (CDC) Managing Epilepsy Well Network, expresses the perceived challenges and negative impact of epilepsy on quality of life [ [1] Center for Managing Chronic Disease, University of Michigan. Key informants’ perspectives on managing epilepsy report. Retrieved: 16 July 2010. Available at: http://www.sph.emory.edu/ManagingEpilepsyWell/documents/reports/Key_Informants_Perspectives_on_Managing_Epilepsy_v5.pdf. Google Scholar ].