History

Epilepsy Over Time

Multiple references to epilepsy can be found in the ancient texts of all civilizations. The history of epilepsy is intermingled with the history of human existence; the first reports on epilepsy can be traced back to almost 2,000 B.C. For example, Hippocrates in his book On Sacred Disease described the first neurosurgery procedure indicating that craniotomy should be performed at the opposite side of the brain of seizures, in order to spare patients from “phlegma” that caused the disease. However, it was not until the 18th and 19th centuries that important advances in research were made to combat the stigma of the disease. No longer was epilepsy tied to religious superstitions linked to divine punishment or possession (Magiorkinis et al., 2014). Attitudes toward people with epilepsy are often influenced by the extent of knowledge about the condition, but misconceptions can now be reduced by appropriate public education.
To view an interactive timeline of the history of epilepsy from Oxford University Press, click here.

Global Perspectives

Currently, around 50 million people worldwide have epilepsy and nearly 80 percent of people with epilepsy live in low- and middle-income countries. It is estimated that up to 70 percent of people living with epilepsy could live seizure-free, if properly diagnosed and treated. The risk of premature death in people with epilepsy is up to three times higher than for the general population and three quarters of people with epilepsy living in low-income countries do not get the treatment they need (WHO, 2019).

People with epilepsy still experience stigma resulting in reduced access to educational opportunities, a withholding of the opportunity to obtain a driving license, barriers to enter particular occupations, and reduced access to health and life insurance. In many countries, legislation reflects centuries of misunderstanding and has either been repealed only recently or still exists. For example, in both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages. In the United Kingdom, laws which permitted the annulment of a marriage on the grounds of epilepsy were not amended until 1971.

In America

In the United States, people with epilepsy were forbidden to marry in 17 states until 1956. The last state to repeal this law did so in 1980. In 1956, 18 states provided for the sterilization, on eugenic grounds, of people with epilepsy. Until the 1970s, it was still legal in the United States to deny persons with seizures entry to restaurants, theatres, recreational centers, and other public places.

The first law to prohibit discrimination against people with physical disabilities in the United States was passed in 1973; however, this had limited scope, and it was not until 1990 that the passage of the Americans with Disabilities Act provided a more uniform remedy to persistent discrimination. (ILAE, 2003). Community advocates have learned that legislation based on internationally accepted human rights standards can prevent discrimination and rights violations, improve access to health-care services, and raise the quality of life for people with epilepsy.

In Florida

Currently, 3.4 million people are diagnosed with epilepsy in the United States and over 300,000 in Florida. Over time, public awareness and action has accelerated. In 1970, The U.S. Developmental Disability Services and Construction Act (DDSA) called for each state to create a Governor’s Advisory Council which would develop a plan of action to bring services to individuals diagnosed with epilepsy, cerebral palsy, or learning disabilities. In March of 1973, Florida’s first statewide conference on epilepsy was held in Tallahassee. Out of this three-day conference came the establishment of the Epilepsy Services Program and a plan for the delivery of services to persons with epilepsy. This plan, known as Florida’s Five-Year Action Plan for Epilepsy, was accepted and appropriated by Florida’s 1974-75 legislature.

The Epilepsy Agency of the Big Bend

On Halloween Day in 1986, John and Marthine Woodward moved their family from University Park, Maryland to Tallahassee, Florida. Upon arriving, the Woodward family realized that there were no epilepsy support groups available for their daughter, Kathy, as there had been in Maryland. As a result, Mr. Woodward soon began running a monthly support group out of a Baptist church. He noted that “it was apparent that we would need to have a formal organization if we were to meet more of the needs of persons with epilepsy”, and on October 13th, 1988 he obtained a 501(c)(3) charter for the Epilepsy Agency of the Big Bend.

On October 1st, 1989, Mr. Woodward and his team started negotiations with the Florida Department of Health and Rehabilitative Services and took on the contract for the Epilepsy Services Program. He became Executive Director of the organization and would hold that position for fourteen years. Mrs. Woodward would serve as a volunteer bookkeeper, a position she held until 2020. Over the years, the Epilepsy Agency of the Big Bend has served hundreds of individuals and families, while becoming a vital asset to the community within the Big Bend region.

Today, the agency navigates tailored, case-managed solutions to care through the provision and payment of diagnostic, treatment and pharmaceutical services; community education; and advocacy for social equity and improved quality of life for all who are touched by this debilitating central nervous system disorder. EABB targets Calhoun, Franklin, Gadsden, Jefferson, Leon, Liberty, Madison, Taylor, and Wakulla counties in Tallahassee; and Bay, Gulf, Holmes, Jackson, and Washington counties in Panama City.