Shining Epilepsy Star: Kelly Pretz: epilepsy advocate, author, spokesperson, and champion
When Kelly Pretz was first diagnosed with epilepsy, she reacted by hiding her condition. However, realizing that this was not what she wanted, she has used this experience to help others and catapult her into a long list of inspired action in the epilepsy community. Some of the huge accomplishments she has achieved: publishing a book by 15 and speaking in Washington DC. as a representative of teens with epilepsy. Kelly Pretz is a true shining epilepsy star.
1. How did you first react when you were diagnosed with epilepsy and what challenges did you face?
I was confused and scared. I also had no idea what epilepsy was which made it even harder. I faced a lot of challenges. I had to get on a medicine right away and we had to find the right amount for me to take. It was hard to adjust to the medicine. This also affected my whole family and they had to adjust. We didn’t know what I could do and what I couldn’t do or what might be dangerous for me. It is a complete life change that happens overnight.
2. How did it feel to hide your epilepsy and why did you decide to come out and tell people?
I hated hiding my epilepsy. I felt like my friendships were no longer complete because I was no longer sharing myself. After a while I no longer wanted to hide it. I had great friends and I knew I was losing them because I was shutting them out. I knew it was time to take a chance and just do it. I thought my epilepsy had made me different, but in the end I was making myself different by keeping this secret.
3. What is your advice for other teens who have been diagnosed with epilepsy?
My advice is to not let it define who you are. Instead defy it and do not allow it to change you.
4. Tell us about your book “Rain at Midnight”. What’s it about, and what lead you to write and publish it?
Rain at Midnight is about a teenage girl who hides her condition of epilepsy from her friends and her world and how she struggles with this. It is the story of a journey and of coming to the realization that we all want to be accepted for who we are. I wrote the book while I was keeping my condition to myself, so it is about my experiences in some way and then some of it is fictional.
5. What have you been doing in the epilepsy community?
I have volunteered for 3 years at the Epilepsy Foundation of NJ. I have started a "Purple Mission" in my high school- this year we celebrated our second Purple Day! I made hundreds of beaded bracelets which I have sold and donated the money to EFNJ. This year I invited other kids I have met along the way with epilepsy to join me in a bracelet-making day at the foundation. I am also a senior girl scout and have earned my silver award by having a health fair last year. I have just been approved to do my Gold award and will be creating a “Teen Mentoring Program” at the foundation.
6. How did it feel to be one of the teens with epilepsy chosen to talk to Congress in March and what did you talk about?
I loved the whole experience! It was so great traveling to Washington, DC. and meeting teens from other states- It was a true honor to have been chosen! I spoke to congress about how important it is to not lose any funding for epilepsy research. I also talked about my own experiences and some of the difficulties and prejudices I have faced along the way.
7. What’s been your most inspiring moment so far in your journey?
It is hard to choose one thing. Getting my book published was very inspiring because it gave me the confidence to do what I have done. Getting the EFNJ Community Service Award of the Year because it showed me how I can help others. Going to Washington, DC. because it showed me how my voice can make an impact on a larger scale.
8. What are your plans and hopes for the future?
I will keep on volunteering at EFNJ. I already have my next years Purple Day in the works and have already discussed with some school advisors about doing an event on a much larger scale. I want to do whatever I can to get the word out. I recently wrote to Mrs. Obama about my mission, asking if she would be interested in helping me get the word out.
9. Anything else you’d like to say or share with us?
I thought when I first found out I had epilepsy my life would change but not for the better. Looking back over the last five years I see this as a positive for me. I think in some way I was supposed to have this condition because it would lead me to help others. It is my dream to help all the other kids who felt the way I did at first. This condition has given me a purpose and motivation to make a difference.
