My younger brother contracted epilepsy when he was four. Even though I have witnessed hundreds of seizures, my heart still jumps when I see one. It's frightening to see how the brain can suddenly and sometimes violently take hold of a person. Seeing a seizure always made me feel a bit helpless; unable to do much, waiting for the epilepsy to relinquish control. My Tucker Fellowship with the Epilepsy Foundation of Connecticut was particularly meaningful to me; I was able to actively help people with epilepsy take control of their lives.
At the Epilepsy Foundation, I worked in all areas of service -- advocacy, information and referral, support groups, and education. I felt education was particularly important. Growing up, I watched my brother battle a great deal of public fear and misunderstanding surrounding his disorder. Also, spending time with a neurologist every week in the epilepsy clinic, I saw that many patients needed and wanted more information about epilepsy.
The Epilepsy Foundation sponsored two large educational conferences during the fall. The first was the annual conference where participants attended sessions covering topics such as new treatment options, epilepsy in children, and even an Epilepsy 101 session led by a neurologist who explained everything from how seizures occurred to first aid for seizures. It was wonderful to see not only people with epilepsy learning about seizures, but also their families, friends, and co-workers.
In response to a national initiative by the Epilepsy Foundation of America, we also sponsored a series focusing on the education of women and their health care professionals. I planned the conference, contacting women's groups, Ob-Gyns, neurologists, support groups, and the local news station. It never really occurred to me that women with epilepsy had special needs and conditions! The response we received was overwhelming. Women called to pre-register, telling me that they had been telling their doctors for years that there was a connection between seizures and hormones, but they had been ignored. At the conference, people enthusiastically exchanged phone numbers, encouraged and supported one another, and asked many questions of the speakers. How rewarding it was to see that a few people working out of one small office could positively affect so many people!
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