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Seizure star: Brenna McNamara: Epilepsy warrior and filmographer

Brenna McNamara is a young adult with epilepsy who made a video for her Girl Scouts gold award about epilepsy. It is an amazing piece of work that very clearly explains epilepsy and fights stigma by showing the viewer real-life young adults living with epilepsy. Must watch! 

Here is the link:

Tell us a little about yourself: how old are you, are you in school or working, are you originally from NJ, do you have siblings, anything like that.

Hi, I'm Brenna McNamara and I'm 18 years old. I am a freshman at Manhattan College majoring in exercise science major on a pre-PT track. I am from New Jersey and am the youngest of three siblings. My brother and sister are twins and 4 years older than me.

How did epilepsy first touch your life?  

Epilepsy first touched my life when I was born because my dad was diagnosed with it when he was younger.  My sister was diagnosed with absence seizures in the 4th grade and has been seizure free since middle school. And in the last year, my brother was diagnosed with epilepsy. My first seizure was a partial focal seizure which occurred when I was in 7th grade.

Tell us how you and your treatment team have faced the challenges

After my first seizure, I was constantly going to doctor appointments and being tested to confirm that I had epilepsy. I missed my spring break of 8th grade for in hospital studies so that they could scan my brain. After that, I had another absence seizure but after a few years my brain activity looked good, so my doctor started to wean me off my Keppra. That was unfortunately not a good experience because I started having grand mals in high school due to trying to come off of my medication. The doctor put me back on Keppra but at higher doses and this had a major effect on my life because I started having major mood swings and my sleeping habits became a lot worse (this is something I deal with today in college). Through all of this I kept up with my school work and I remained a competitive athlete: travel soccer, basketball, and lacrosse.  

How did you come up with the idea to make this film? How difficult was it to make? Where has it been shown? What responses have you gotten?

I came up with the idea to make this film when I was thinking about an idea for my Girl Scout Gold Award project. These projects are an opportunity to create awareness about something close to you and that has an impact on your community. This project offered me the opportunity to participate in multiple diverse conversations within the epilepsy community. I was fortunate to share my experiences with others and to gain knowledge from others' experiences. For instance, the first event that I attended with the Epilepsy Services of New Jersey was a day at the beach where I met Andrea Raccioppi who introduced me to others and their families. I was very awkward and shy at first but after a while, I felt comfortable. I found myself sharing my stories and learning about others. Likewise, I met someone's father who was volunteering and he told me about his son and how epilepsy had affected him. He had a seizure in front of his friends at a party and they didn't act on it because they thought that he had taken something (a drug) and was having a reaction. Then I attended the Paint the Pony Purple event at the Stone Pony where I met many more young people willing to share their stories. There was one person who stuck out to me; she was a woman who had told me that her young daughter had epilepsy and she didn't want to go to the event because she was bullied so harshly in school about having epilepsy that she suffered from depression and anxiety. I knew that all of these stories had to be heard because they were important reasons as to why there needs to be more conversations about epilepsy to create greater awareness. Even my own story needed to be shared. I once had a grand mal seizure right outside a pizza parlor as I was going to my first day of work (for my first job) and a woman who saw me neglected to help me. When a man stopped to help and asked her to call 911, she responded by saying she had to leave. My sister was so upset that she started a conversation on our neighbors' page on Facebook®. She received many positive comments of sympathy, but she also received comments where people said the woman probably didn't stop because she was placed in a situation in which she didn't know how to help. This was a big reason why I created the video: so that the next time someone has a seizure in public, everyone knows how to help. 

Making the video was a challenge since the Gold Award requires you to do research and create a plan and get it approved before you start the work. I then needed to recruit someone to help me with the camera and editing and recruiting people who were willing to share their stories. The overall project took over 1 year from start to finish.  

So far, I have posted the video on Youtube® and shared it on all of my social media platforms including Facebook® and Instagram®. Also, I worked with Andrea Raccioppi from the Epilepsy Services of NJ to get it on the Epilepsy Alliance America's website.

What does the future hold for you? 

In the future, I hope to continue being involved and helping the community. Also, I hope to continue my studies to become a physical therapist.  I want to create more time to be more involved in the epilepsy community as a volunteer and advocator too. Additionally, I am planning on trying to get the video shown in the health classes at my old high school during epilepsy awareness month.

What would you like for epilepsy and those living with it in the future?

After seeing the response from my video, I would just like everyone to know seizure first aid. Also, I would like for epilepsy to be a bigger topic of conversation because it does affect so many people and the only time it gets brought up on a larger scale is when it affects someone who is well known, as occurred in the past year with Cameron Boyce. I would like people to understand what epilepsy is and how it affects people of all ages and abilities, from a college student to someone in a wheelchair. Also, I want people with epilepsy to know that not everyone without epilepsy is ignorant about it. Additionally, I want children and teens to feel empowered to talk about their journey because it will open a gateway for others to feel comfortable about sharing their experiences with one another and educate others. Finally, I want everyone living with epilepsy (especially teens) to know that the best way to create epilepsy awareness starts with advocating and educating others themselves in their own community.  

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