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Epilepsy Foundation has grown to serve a need

"Sandra" is a young woman who came to the Epilepsy Foundation because she had a seizure. She told us she fell to the ground, had muscle jerks and a convulsion. She told us this was her first seizure. We sent her to a neurologist for diagnosis and treatment services. The neurologist determined that this seizure was not her first. In fact she had a lifetime of "absence" seizures during which time she gave a blank stare and was unaware of anything going on around her. She never knew, nor did anyone tell her, that she had a seizure condition during her childhood and adolescent years. She had never received medical treatment. "Sandra" needed and continues to need medical attention. Because of her financial situation, she cannot afford the medical costs. So, our agency pays for her doctor's visits, the diagnostic testing, such as an EEG test and the lab work needed to analyze the level of medication in her system. We also provide counseling, group support, education programs and employment assistance.

"Sandra" came to an agency that was founded in May 1973. From its humble beginnings when services were provided out of the founder's home, our agency has grown into the largest epilepsy services program in Florida. Although size is a key element in an agency's development, it is minuscule in comparison to the quality and comprehensiveness of services provided as well as the care and compassion of the service provider.

In 1989, our agency received recognition for its program of excellence from the Epilepsy Foundation of America and the state Department of Health and Rehabilitative Services.

Thanks to the grants from the state of Florida and Hillsborough County, the allocations from the United Way of Greater Tampa and the United Way of Central Florida and donations from corporations, civic groups and individuals, expenditures to assist our clients (like "Sandra") rose dramatically in 1989. Our largest single expense was in medical services, where $90,540 was disbursed. At the end of fiscal 1990, more than $100,000 will be disbursed for medical services.

In 1989, our agency expended $342,240 on medical diagnosis and treatment, individual and group counseling, family support, public health training, professional training and support, employment assistance and placement.

As a result, our agency positioned itself as the leader in providing a quality and comprehensive program of epilepsy services in the state of Florida. In 1989 alone, our number of clients increased from 994 to 1,224. And during the last two years, our caseload increased by 40.3 percent, or 494 clients.

These achievements are a tribute to our board of directors' vision, the commitment of dedicated staff and volunteers and the effectiveness of short-term and long-term planning. These achievements are also a tribute to our donors. Without their support we could not reach for the goal of providing a better life for people with epilepsy.

"Sandra" is one of those persons. There are at least 16,000 to 20,000 men, women and children in the Tampa Bay area who live with this disorder. They experience a rapid firing of electrical impulses between their brain cells. Other people see the external reaction of a seizure in the muscular, organic and glandular parts of the body.

At times what we see is not a pretty picture. We see a person falling, twitching and shaking uncontrollably and losing control of bodily functions. We may want to run away. At other times we may not even be aware of a seizure occurring because the person is having a more mild form of seizure that exhibits itself in a person's staring into space for a few seconds (like daydreaming).

Regardless of the kind of seizure, each person needs medical treatment, counseling information and support types of help.

We do not see our client load decreasing. Our clients need medical help to control their condition. And this takes money. "Sandra's" problem is real. It will not go away. But it can be controlled with medical help. Continued support allows our agency to provide quality care and a better life for persons with epilepsy.

Thomas L. Orth is executive director of the Epilepsy Foundation of West Central Florida.

- This is one in a series of guest columns on social service agencies that receive money from the United Way of Greater Tampa. The United Way's annual fund-raising campaign began Sept. 11 and will run through Nov. 16. The agency hopes to raise $10-million this year to distribute to 43 agencies.