Hello my name is Steven Dorau; I currently am the president of the Board of Directors for the Epilepsy Foundation of Connecticut. I was diagnosed with epilepsy when I was 14 years old and was diagnosed with petit mal seizures or absence seizures. I would have five to ten seizures a day in the beginning. Over the years I went through a number of medications that did not work for me or had very bad side affects. Growing up I was restricted on what I could or could not do. A short while later my brother was diagnosed with epilepsy, also petit mal.
Growing up with Epilepsy can be and was very difficult and challenging. It was also a disease that was not known or
spoken about. I went through many different stages, denial, rebellious, and finally acceptance. The biggest thing that affected me as it does all teenagers at that time was that I could not have any seizures for 3 years to get a driver’s license. Wow – that felt like eternity!
Then we heard of a study going on at the West Haven Veterans Administration for a new drug, Depakote, and I was quick to sign up. I endured many tests, strobe lights, sleep monitoring, EEG’s, and of course blood tests. Slowly the seizures went away until I was finally seizure free. Now to wait those 3 long years!!
Three years ago I switched to Depakote ER so that I am to take all of my medications in the morning. A while back my neurologist asked me if I would like to undergo testing to see if I could go off my medication, and I personally didn’t mind being on medications because I can be assured I will not have any more seizures.
During my time of having epilepsy I have seen some family and friends get diagnosed with epilepsy. It was back in 1999 when my nephew Billy was voted our “Winning Kid” that got me involved with the Epilepsy Foundation of Connecticut. It started as helping out in our Mud Volleyball Tournament to where I am today. I am glad to say that my nephew Billy has outgrown his seizures and is free of his medications.
We have been and continue to educate people, young and old about epilepsy.