GENERAL FACTS

The Epilepsy Foundation of Southeast Wisconsin is the only agency specifically organized to serve the diverse and special needs of the 30,000 persons with epilepsy in Milwaukee, Ozaukee, Waukesha, and Washington Counties. An additional 100,000 family members also benefit from EFSEW's services.

Epilepsy is a neurological condition. It is the term for more than 20 different types of seizure disorders produced by brief, temporary changes in the brain's electrical system. These brief malfunctions mean that more the usual amount of electrical energy passes between cells. These changes are manifested in what we call seizures. Seizures are a major national health problem.

Epilepsy can affect anyone, at any age, at any time.

Epilepsy is a chronic neurological disorder which creates medical, economic, educational, and emotional and social problems of such dimensions that it is imperative that services provided by the Epilepsy Foundation be available to children, teens, adults, and the elderly in our community.

When do people develop epilepsy?

30% of cases develop before the age of five. 70% of cases develop before the age of 18. However, the incidence of seizure disorders is growing rapidly in older adults. While medical technology has enabled people to survive heart attacks, strokes, brain tumors, and other such conditions, people often develop seizure disorders following such medical emergencies. In fact, there are now as many cases of epilepsy in those over the age of 60 as in those under the age of 10.

Moreover, while newer medical treatments can significantly control many types of epilepsy, 40-50% of cases remain medically uncontrolled.

Approximately 180,000 cases of epilepsy are newly diagnosed each year in the United States (about 493 new cases per day). Seizures result in up to 42,000 deaths in the United States each year -- more than the number of deaths from breast cancer!

The Bill of Rights for People with Epilepsy

Earlier in the year, the Epilepsy Foundation of New York City, Novartis Pharmaceuticals Corporation and leaders in the epilepsy community developed a Bill of Rights for People Living with Epilepsy. The Epilepsy Foundation affiliates of Greater Chicago, Los Angeles and South Florida also contributed extensively in the development of the following ten points:

1. People with epilepsy have the right to be treated fairly and with respect.
2. People living with epilepsy have the right to receive comprehensive, understandable information about epilepsy and its treatment.
3. People with epilepsy have the right and responsibility to be active members of their healthcare team.
4. People living with epilepsy have the right to know and understand all of the treatment options that are available to them.
5. Special populations of people with epilepsy (e.g. children, adolescents, women of child-bearing age, people with developmental disabilities, the elderly, etc.) have the right to ask about treatment and information appropriate to their specific needs.
6. People living with epilepsy have the right to understand all of the options and legal protections for accessing health care benefit coverage available to them.
7. People with epilepsy have the right to know that health care providers will hold personal and medical information confidential.
8. Children with epilepsy may have the right to receive special education and related services at school; parents have the right to advocate for such services.
9. People with epilepsy have the right to know that there are federal and state laws that may provide them with protections in the workplace.
10. People with epilepsy have the right to access help and support that will assist them in making informed decisions about living with epilepsy.

If you would like more information about this initiative, please visit www.EpilepsyBillofRights.com.