Epilepsy is a central nervous system disorder that is characterized by unprovoked, recurrent seizures that disrupt communication among brain cells. Although it is often amenable to clinical treatment through medications, surgery, and diet, epilepsy can be a life-altering condition for persons affected by it. Twenty-five million Americans, or one in every ten, will have at least one seizure in their lifetime. Although epilepsy occurs in men, woman and children of every culture and nationality, research indicates there is a greater prevalence among minority populations living in poverty than the general population.
Of the 2.5 million Americans diagnosed with the condition, 300,000 are children and youth aged 18 and younger. Every year, approximately 50,000 new cases of epilepsy are diagnosed in children and adolescents under the age of 18. Seizures and epilepsy have a serious impact on the lives of children and youth. The potentially devastating effect of epilepsy on brain development in early childhood is one of the most challenging aspects of the disorder, and childhood seizures can have a measurably negative effect on educational achievement. Research indicates that children and youth with epilepsy tend, on average to be one year behind the expected reading level. Delays in language, visual-spatial function, problem solving and adaptive behaviors are not uncommon. Teenagers face unique challenges related to driving, school attendance, work, and dating. Severe seizures, injuries, side effects of medication, pain, lifestyle restrictions, stigma and depression can all contribute to a poor quality of life for children and youth with epilepsy.
The goal of eliminating seizures while preventing side effects is potentially achievable for many children and youth. However, organized systems of services are not in place to uniformly provide timely access to care that could improve the quality of life for children and youth with epilepsy. Children living in medically underserved and rural areas as well as racial and ethnic minority populations often lack access to a medical home and specialists and encounter difficulties in having their epilepsy diagnosed. There is a shortage of pediatric neurologists, and experts in the treatment of epilepsy among them are even fewer. As a rule, diagnosis of epilepsy is often delayed and frequently there are further delays in identifying the exact type. It also takes time to find the appropriate pharmacologic and support services to assist children and families affected by epilepsy so that they can achieve seizure control.
The Children’s Health Act of 2000 authorized the agencies of the Department of Health and Human Services to: (1) expand current epilepsy surveillance activities, (2) implement public and professional education activities, (3) enhance research initiatives, (4) strengthen partnerships with government agencies and organizations that have experience addressing the health needs of people with disabilities, and (5) implement demonstration projects in medically underserved areas to improve access to health services regarding seizures to encourage early detection and treatment for children.