Bringing awareness to epilepsy
Empowering kids and teens with epilepsy to follow their dreams and never look back! Epilepsy advocate, Public Speaker, Author
About the purple project: My Story
My life dramatically changed the morning of December 6th, 2016. I was in 5th grade and getting ready to take a math test. I remember feeling off and experienced my first grand mal seizure in front of the entire class. I remember it all felt so unreal and like a dream. I was the most scared I had been in my life, and to make it worse, I remember my peers talking about me. Frightened and feeling alone I began to undergo multiple tests while they tried to find an answer. I was diagnosed with epilepsy, a disorder of the central nervous system where there is abnormal brain wave activity. The abnormal brain waves can in turn cause a seizure, uncontrolled bursts of electrical activity that may change awareness, sensation, and muscle control.
Soon after I received my diagnosis I was referred to Riley Hospital in Indianapolis to see a neurologist. I was blessed to be paired with the most amazing pediatric neurologist. She helped get my seizures under control and allowed me to feel like I could still do most everything I had been able to prior to my first episode. I decided at that point that epilepsy would not define me and that God would take care of me. I became the patient pushing the limits and before I knew it they had agreed to allow me to do any physical activity that my body would tolerate. I have pushed those limits ever since. My goal with the purple project is to educate and empower other children and teens with epilepsy to understand and empower themselves with knowledge about their diagnosis. I also want to educate and empower the larger community to know how to react in the case they witness an individual having a seizure. The more we can educate and empower others, the greater the chance we decrease the stigma associated with epilepsy and prepare others to respond to helping someone who is having a seizure both during and after the episode.
Never stop chasing your dreams!
After my first seizure, I was determined to make sure my diagnosis of epilepsy did not change who I was or what I could and could not do. I remember some of my friends at school whispering about me and some were just plainly scared of me after they witnessed my seizure. I remember feeling very alone and sad. So much had changed in an instant. I no longer wanted to go to school because I was scared I would have another seizure at school. To make things worse, the first Doctor I met told me that I would not be able to spin or tumble and do some of the things that came with dance. I was devastated. However, my parents did not settle for no and we found an amazing Doctor at Riley Hospital who listened to my concerns and my dreams, and she agreed to let me slowly get back into the activities I used to do. After a slow progression, I found myself constantly pushing the limits and I have never looked back since. I hope that my website can give you hope and courage to never give up on your dreams and to always keep reaching your goals! I pushed through and kept dancing and I have never looked back! I hope the stories I share on my website of other friends I have met with a diagnosis of epilepsy also give you the courage and bravery to chase your dreams too! If you would like to share your story with me, I am happy to listen and share! Just drop us an email below! I can't wait to hear from you!
I'd love to come speak in your classroom!
I am so excited to be bringing epilepsy education and awareness into schools in Indiana. In addition to epilepsy facts and general knowledge I also review seizure first aid and leave a poster for each classroom I visit. I can provide education for both students and educators alike! I would love to come visit your classroom too!
Epilepsy Facts
Epilepsy Facts:
Epilepsy is the fourth most common neurological disorder in the world and is a disorder in the brain. Patient who have had two or more seizures are diagnosed with epilepsy. The CDC (2022) states that there are approximately 3.4 million people with epilepsy nationwide (around 3 million people and around 470,000 children).
A seizure is a sudden, uncontrolled electrical disturbance in the brain. It can cause changes in your behavior, movements, feelings, and in levels of consciousness. There are many types of seizures. Seizures can range in symptoms and severity. Seizure types will vary based on where they originate in the brain and how far they spread.
Seizure symptoms can include but are not limited to: Staring, jerking movements of the body, loss of consciousness, breathing problems or stopping breathing, loss of bowel or bladder control stiffening of the body, and falling suddenly for no apparent reason. Individuals may also not be aware of what is going on around them.
Generally, most seizures last from 30 seconds to two minutes. A seizure lasting longer than 5 minutes is considered a medical emergency.
An EEG is a specialized test that measures electrical activity in the brain using small electrodes attached to a persons scalp. An EEG can help diagnose epilepsy.
Most seizure disorders can be controlled with medication. The good news for you and me is that you can work with your doctor to control your seizures and continue to do what you love to do!
The Purple Policy: Seizure First Aid
Changing policy to implement annual seizure first aid into all schools across the Country
I believe it is imperative that every teacher, staff, and school personnel in every school across the Nation is educated annually on seizure first aid! Currently only 20 States have implemented any type of seizure first aid law and there are varying degrees of the law. My State of Indiana adopted House Bill 1089 but the Bill was repealed in November 2023. I immediately contacted my local legislators to let them know of my deep concerns. Senators Niezgodski and Senator Doriot filed a new Senate Bill 56 which read as "Provides that school corporations and charter schools shall require all applicants for employment and school employees who will have direct, ongoing contact with children within the scope of the applicant's or school employee's employment to attend training concerning recognition of the signs and symptoms of seizures and the appropriate steps to be taken to respond to these symptoms." This bill would have been pivotal in protecting children and teens like myself with Epilepsy across the State of Indiana. However, it did not make it to a hearing. I have called upon both Republicans and Democrats who I have met with and those on the education and career development committee to craft a new Senate bill with me to make sure seizure first aid is implemented in all schools across Indiana. Currently I have spoke to over a dozen legislators, who are willing to work with me to make seizure first aid a priority piece of education in schools for teachers and staff. Seizure recognition and seizure first aid could save a life and it is imperative that all teachers and staff know how to appropriately respond to a student having a seizure both during and after the seizure. My goal is to change policy across the Nation and assure that every school is seizure first aid certified every year! Every student deserves to feel safe in school especially those children and teens with known epilepsy! I am so blessed to say that I have currently garnered support for the new Bill as there is a main author and six coauthors and more to come as the legislators I am working with will continue to garner support, and I will continue advocating until all schools are seizure first aid certified across Indiana and across the Nation. If you want to contact your local legislators I am happy to assist you! Lets make a difference and lets keep our children and teens safe!
Live TV and Live Radio Appearances discussing the importance
What a blast discussing epilepsy education and awareness and seizure first aid on Life.Style.Live with Kayla on WISH TV8 in Indianapolis! I was able to articulate how important it is for all schools across the Nation to be seizure first aid certified on an annual basis. Seizure first aid could save a life! We also discussed my very own book, the ABC's of Epilepsy which just got published! So excited for the book launch and to share my ABC's of Epilepsy book with kids across the Nation!
Educating students across The State Of Indiana
The Purple Project: Epilepsy Education in Schools
I have spoken to hundreds of students in multiple school districts this past year! It has been an honor and a blessing to be invited to speak to these wonderful kids in elementary and middle schools! I utilize a power point presentation to educate kids and teens on epilepsy education and seizure first aid. I change the power point presentation to accommodate for each grade level so the information is easy to understand and that the message is the same but age appropriate. I also distribute seizure first aid posters to each classroom! I would love to come speak at your school! It is one of my favorite things to do!
I also speak to groups of teachers, staff and faculty about epilepsy education and seizure first aid! In addition I speak to businesses and groups about my story and about epilepsy education and awareness in the workplace! I would love to come speak with your business or group today!
Recently I spoke at a November Penn Harris Madison School Board Meeting to educate the Board and community about epilepsy education and seizure first aid. I encouraged the Board to make sure that every teacher and staff member in the district is seizure first aid certified. I was able to share my story and how important it was for everyone to be knowledgeable about epilepsy, how to identify a seizure and what to do during and after a seizure. I gave each of the board members a purple epilepsy awareness bracelet as a reminder.
Recently I was able to present Dr. Thacker, superintendent of PHM schools with 15 copies of my ABC's of epilepsy book to provide epilepsy awareness! Each of the 15 schools in the PHM district will receive a copy of my book! I signed each copy with a personal message of hope! I can't wait to leave my Legacy in the PHM District where I completed my schooling!
I can't wait for my upcoming book showcase to share my newly published book, "The ABC's of Epilepsy: Family and Friends Edition." If you have the ability to donate to help fund the printing of my two books, I would be grateful. My books will always be free to children and teens with epilepsy and their loved ones who are helping them navigate an epilepsy diagnosis! Contact me for more details on how to donate!
Luke and I got to catch up while enjoying some ice cream!
Epilepsy Warrior Luke
Luke and I got to catch up yesterday and talk about epilepsy, school, summer plans and our love of Bluey the cartoon! Luke made his debut on the pitching mound last week and did a great job! I am so proud of him for never allowing his diagnosis to define him! He still aspires to be a professional baseball player and play for the South Bend Cubs! Luke has an infectious smile and laugh and is pure joy to be around! He is also loved by his older siblings! Luke will get to go to basketball camp this summer and will also attend a camp based off of Greece! I am so excited for him and can't wait to discuss our summer adventures when we meet up for ice cream again! May God continue to bless and keep you Luke!
Colleen is an amazing epilepsy warrior
Colleen's Story!
Colleen was diagnosed with epilepsy in the fifth grade during the winter. Her story started as she was going door to door selling girl scout cookies, when the next thing she knew she was lying on her grandma’s couch covered in snow. She remembered being so confused and was sobbing because she hadn’t known what happened. She was diagnosed with epilepsy that consisted of absent seizures where she can’t remember what is happening five minutes before or five minutes after her episode. She had a friend in her girl scout troop who had been previously diagnosed with epilepsy as well, and was blessed to feel very supported by her and her family during this time. Her friend helped her through the diagnosis and to help find a doctor to fit her needs. When Colleen first met with the neurologist, they had originally told her that the seizure was puberty related and that she would grow out of it. They planned to test her at numerous ages of 16, 18, and 21. The neurologist and her nurse were super sweet and were very supportive to Colleen during this time. A few of Colleen’s close friends knew so they could help in a situation that could possibly occur. There were a few times where Colleen had fears of not being able to get her license or having to quit dance, but is thriving and has pushed through her diagnosis. She has been doing well for the past 6-7 years on her medication and is leading a normal life! During Colleen’s 8th grade year, she decided to join show choir and was also able to thrive doing so even with previous fears that it might bring about triggers! Colleen is so strong and super sweet!! I am so happy to have talk with her and learned a little bit about her own story and diagnosis! You can read below to see some Q&A I discussed with Colleen:
1. How did you feel when you were initially diagnosed with epilepsy?
Colleen was diagnosed in the 5th grade and was she was absolutely terrified after receiving her diagnosis. She thought that epilepsy was going to change the entire way that she lived her life. There were so many things that the doctors were unsure about including if it was a puberty thing and if she would eventually grow out of it. The fact of not knowing for sure and not having complete answers is what made it so scary and brought about so many questions regarding her diagnosis.
2. Were you afraid it would limit what you could or could not do?
She was very scared it would limit what she could and couldn’t do. She was scared she wouldn’t be able to drive and would have to quit dance. With show choir as well it brought about many fears that she would have a hard time with long days, stress, and bright/flashing lights. There were times where she would freak out on stage because she would tend to lock her knees and start to feel “funky”.
3. Did your friends know? If so, how did they feel or treat you?
Not many friends knew about Colleen’s diagnosis, but she made sure to have a few close friends who knew. This way if anything ever happened they would be there to help her tough it.
4. What brought you support and compassion during the initial time after the diagnosis?
Colleen’s friend who had gone through the same situation and diagnosis really brought her comfort and support during the time. She was able to relate to her but also find guidance. Her friend had been going facing epilepsy for four years prior so being able to talk to her and ask questions was very reassuring. Learning that she would not have to give up performing and still being able to be in her element during the time was something very comforting to Colleen.
5. Did your neurologist help you to understand the diagnosis and your treatment?
“100%, she is the sweetest lady in the whole wide world; her and her nurse both!” She has dealt with so many children with epilepsy and was able to explain it to Colleen in a manner she would understand, but also grow with her as she got older. She was very willing to work with Colleen and helped to calm her and feel comfortable with the diagnosis. Was very direct with Colleen and walked her through all of the tests and processes such as her EEG.
6. How has epilepsy affected you? Do you still live life the way you once did before?
Colleen’s diagnosis hasn’t affected her too much as she has been living with it since she was so young. She is still able to lead a normal life and do the things she has always wanted to do. Colleen is always now very aware of herself and her surroundings. Shakes sure to always take care of herself and make sure she is taking her medications.
7. Was there something that really helped you break a barrier for your diagnosis and to help you know you can still achieve great things with a diagnosis such as epilepsy?
Show choir was definitely the biggest one. Colleen has always been a hard worker and strive to do well in school and life. Being able to focus on something other than her diagnosis was very helpful in reminding her that she could do anything and lead a normal life.
8. What are your plans for the future? (job, major, anything)
Collen is currently a sophomore at Trine University in Angola and is an Elementary and Special ED dual license major. Her plan is to work in an intercity school in the 1st-3rd grade. She has wanted to be a teacher since she was in the 1st grade and is living out her dreams.
Meet my friend Luke!
Luke was diagnosed with epilepsy and never let it stop him! He is living life to the fullest!
1. How did you feel when you were initially diagnosed used with epilepsy?
I felt sad and scared.
2. Were you afraid it would limit what you could or could not do?
Yes, I was afraid. I was also worried about having another seizure.
3. Did your friends know? If so, how did they feel or treat you?
Yes, I told my friends. They were okay with it and were kind to me about it.
4. What brought you support and compassion during the initial time after your diagnosis?
My parents helped me a lot.
5. Did your neurologist help you understand the diagnosis and the treatment?
Yes, she explained everything to me.
6. Do you still get to do what you love doing?
Yes. I can still do everything I love doing like play with my friends, watch TV, and play baseball.
7. What advice would you give to other kids who have epilepsy?
Don't be scared. Tell your parents and your teachers how you're feeling, especially if you think you might have a seizure.
8. What do you want to be when you grow up?
I'd like to be a professional baseball player.
9. Did your faith help you through your initial diagnosis?
Yes, I prayed about it and asked God to help me, especially when I was feeling worried or scared.
10. Anything else you would like to share with me?
Sometimes it's hard for me because I need to go to bed earlier than my brother and sister because of my epilepsy. I try to remember that everyone has different challenges. Going to bed early and taking my medicine is not fun, but it's really important.
Thank you Luke! We think you are amazing and a true inspiration for all kids with and without epilepsy!
Epilepsy Warrior Abby Gibson
Abby Gibson
My sweet friend, Abby is so amazing! She is a positive example of overcoming a diagnosis of epilepsy with strength and persistence!
Abby is a fellow MAO sister and competes in the Miss Indiana Organization. She attends IUPUI and is studying music therapy as she has a passion for teaching children with special needs!
Abby's Story:
Abby's epilepsy story is one of overcoming obstacles and learning how to manage her absent seizures. She was very nervous as to how her epilepsy would affect her life, but she is doing well and living a normal life!
How did you feel when you were initially diagnosed with epilepsy?
" I felt it answered lots of questions for me since I was missing bits of information throughout the day especially at school which helped me understand why it took me longer to complete assignments."
What brought you support and compassion during the initial time of the diagnosis?
Realizing it was a tic and something that I couldn't control. The support of my family. Explanation for why I was struggling in school and had to work extra hard to receive good grades.
Quote from Abby:
"If I hadn't been misdiagnosed for so long, I probably would've been diagnosed with autism earlier. The neurologist told me that when I was diagnosed with seizures, this is why I felt behind academically and socially. The therapist that diagnosed me with autism said professionals probably took that into account with my deficits and didn't look into autism."
Epilepsy Walk 2024! What a blast raising money for epilepsy
Being a part of the Indiana Epilepsy Foundation Board is one of the highlights of my advocacy!
Research for epilepsy
It is so important to raise funds to generate money for epilepsy research. There is still so much unknown about epilepsy.
The Indiana Epilepsy Annual Walk is a great way to meet fellow epilepsy warriors and to raise money
Come join us next year! Send me an email to find out more information and how to get involved!
Share your story with me! I'd love to hear from you!
I would love to interview you or feature your story for our viewers. We all have unique and beautiful stories and I would love nothing more than to share your story and empower others!
email me at: purpleproject@myyahoo.com
Follow me on my instagram accounts: missamericasteenin thepurple.project_
ABC's of Epilepsy Books
My two books were a true labor of love! I hope they can provide support and comfort to children, teens, and their family and friends for years to come! I donate my books to pediatric neurology and pediatric offices, schools, school nurses, and hospitals across Indiana! I can't wait to touch the lives of other children and teens with epilepsy through my book! I hope to bring them hope and show them just how resilient they can be!
I am now working on book #3! This book is about a dancer named Bella who did not let a diagnosis define her! The book is aimed at all children and teens who may be affected by a medical condition or by any type of adversity. I want to continue to inspire children and teens to live out their dreams!
My ultimate goal is to get my books into hospitals, pediatric offices, and schools across the Nation!
If you are someone that is interested in underwriting the cost of more books to donate to as many kids and teens as possible across the Nation I would be grateful. Please email purpleproject@myyahoo.com