Emily

Meet Emily, she is living with Epilepsy, here is her story.

Emily was diagnosed with Epilepsy back in 1999 when she was in junior high school, she is now 29 years old.  Her seizures didn't start out how people normally think of seizures.  She kept having "deja vu" moments.  Her mother took her to a couple of different doctors and each told her that she seemed to be making up her symptoms and wondered if she was just wanting some attention.  It was only after having 2 generalized seizures that the doctors confirmed she was indeed having seizures and had been for a while.  The cause of her seizures were never confirmed, she does not have a family history of seizures.  The only thing that comes to mind on how this could have happened were some falls she had taken while playing sports, a new acne medication or the Hepatitis B vaccine she had just had.  None of these can be confirmed, it can only be speculated. 

Back in 2000,the beginning of her senior year of high school,  Emily had her first brain surgery at Johns Hopkins in Baltimore, Maryland.  She had a grid of electrodes implanted and was scheduled to have brain tissue removed.  Unfortunately her seizures became so bad that the surgery was cancelled and the electrodes were removed.  Next she went on a special diet and had to fax her doctor what she ate and her seizure activity on a weekly basis.  Her mother found a new neurologist who specialized in seizures related to hormones, which most of hers seemed to be from.  The new doctor told her that she was a candidate for surgery and so she made the choice to once again go ahead with surgery.  She had part of her left temporal lobe and left hippocampus removed.  The doctors told her that the risks of this surgery would be complete memory loss.  She would need to take notes to remind her of people and things.  She did experience some memory loss but not to the extent that the doctors warned her about. 

In 2008, Emily received her seizure response dog Callie.  Her dog alerts her when she will have a seizure so she has time to go take her medication or if she is asleep, the dog will go alert someone else to help.  Emily still has seizures, mainly when she lets her emotions get to her.  She has taken a bunch of different medications and have been selected for studies but has yet to find any combination that completely stops the seizures. 

Emily says the biggest affect that Epilepsy has had on her life is not being able to be independent.  She cannot drive or go anywhere by herself.  It took her a while to get used to never being alone but eventually accepted it.  Last year however, she found the man of her dreams.  She had dated before but as soon as they saw her having a seizure, the relationship would end.  She made sure to tell this new guy about her seizures and his response was "I love you for who you are and will be there for you through anything".  He asked her to marry him in February and they married this past July. 

Emily is also very thankful to her mother and father who have stuck by her side and have tried to help find a way to stop her seizures.  When asked what she would like people to know about people living with Epilepsy, she said that having Epilepsy should not define a person.  Just because a person has Epilepsy doesn't mean that they need to be treated differently, Epilepsy will not keep people from pushing forward and it does not mean that they are not "normal".

Thank you Emily for being willing to share your story!!!!  Thank you for being a shining light and helping spread awareness!!!!!!!