1 in 26 Stories

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Approximately 1 in 26 people in the United States will develop epilepsy at some point in their lifetime. These are the stories of some of your friends, neighbors and family members in Pennsylvania whose lives have been touched by epilepsy, and how they are refusing to let seizures define them. Whether you are 1, you know 1, or you love 1, you too can achieve your goals with or without epilepsy.

Cameron Chenail

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Cameron is a sophomore who plays in the Annville-Cleona High School Marching Band in Annville, PA.  She has had intractable absence seizures since age 6.  On November 1st, 2013, when the band took to the field at halftime at the home football game against Donegal, each band member wore purple gloves instead of their white ones, to kick off Epilepsy Awareness Month and to honor one of their own who suffers from epilepsy, Cameron.  The announcer introduced the band and Cameron, and explained the purple gloves, Epilepsy Awareness Month, and included facts about epilepsy.  The band also presented Cameron with a purple football, and the FCCLA (Family, Career, & Community Leaders of America) student organization collected money to help with costs associated with her new service dog.  Cameron was there with her new seizure alert dog, Elwood, after having just completed three intensive weeks of training with Elwood at Canine Partners for Life, of Cochranville, PA.

Mary Doane

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I never thought I would know this much about epilepsy.  Epilepsy is one of those hidden things – you don’t know someone has it until they have a seizure.  I never really thought about epilepsy until I had my first seizure in 2009.  I went from having a job that involved a lot of travel all over the United States, to suddenly finding myself having 4-5 seizures a day and no longer able to drive a car.  I never had a grand mal seizure, but the petit mal seizures would completely wipe me out.  I was tired a lot, and by the time I started feeling better, I would have another seizure.  I tried a number of different combinations of medications, but when nothing seemed to work, my neurologist suggested brain surgery.  I was nervous at first, but I talked to other people who had gotten surgery and I also talked to my family.  I ultimately decided that I did want to try surgery. 
 I had epilepsy surgery in 2013.  It is unique how quickly you are discharged after the surgery – I went in for surgery at the beginning of the week and was able to go home on Thursday.  I know that for hospitals, discharging people quickly makes financial sense, but sometimes that is really what is better for the patient, too.  When I got to come home, be in a familiar place and sleep in my own bed, it was much better for my recovery! I have not had a seizure since my surgery, and I am now in the process of healing.  I still can’t drive, but I am trying to be patient.  What you have to realize is that you didn’t have your tonsils out and you didn’t have your appendix out – it is going to take time to recover.  I am taking speech therapy, because I still sometimes forget words and have difficulty finding the correct word when speaking or writing. 

 My advice for someone who is thinking about epilepsy surgery would be to think about it, completely research the surgery procedure and all of the pros and cons, and talk to people who have had it done.  It’s scary, but you have to do what is best for you.  You have to do it because you want it done for you, regardless of how supportive the people around you might be.  You also have to be prepared to accept change. I can’t do the job that I did before, but I am okay with that. 

 I think a lot of people don’t realize that you can be older and all of a sudden seizures can happen to you.  That is why I wanted to share my story.

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