Meet Tia from New Orleans, founder of Project Purple Butterfly and Assistant Director of Student Life at Loyola University. Read Tia’s full story and mission below.
Tia’s epilepsy journey
I was diagnosed with epilepsy when I was 13 years old. I was in middle school when the seizure took place. I recall waking up on the couch of my principal’s office with my parents and the principal suggested I speak to a neurologist because she had observed behaviors that were seizure-like.
After visiting the neurologist’s office, he performed an EEG. During the EEG, I had a seizure and the doctor told my parents my brain activity during the seizure was indicative of epilepsy. I was first prescribed Keppra, but when I turned 15 my doctor prescribed me with Lamictal, nearly two years later, he had increased my dosage. My behavior during my seizures vary in severity, but my triggers are pretty consistent.
Epilepsy has impacted my life in several ways, but the most significant was my decision to shift careers in my senior year of college. I had spent my college career preparing to be a broadcast journalist on CNN, but during a nightly newscast I had a seizure and realized it was due to sleep deprivation. This experience led to my decision to pursue a different career path.
Tell us about Project Purple Butterfly
Project Purple Butterfly is a non-profit organization, created in 2019 nearly a decade after I was diagnosed with epilepsy. Our mission is to promote seizure first-aid, epilepsy awareness and empower those who face challenges with epilepsy. Through community outreach, mentorship, and education, we will continue to inform others and impact the epilepsy community. We have developed a support group and a podcast to discuss topics that impact the community such as health coverage, mental health, and a number of other obstacles and challenges faced by people with epilepsy.
Learn more: Find a epilepsy support group
I also focus on supporting caregivers and their experiences with those living with epilepsy, such as fear for loved ones or managing the stress of caring for someone with epilepsy. Project Purple Butterfly is continuing to evolve and create safe spaces for those in the epilepsy community.
Next steps for Project Purple Butterfly
Ultimately, I plan to start an outreach program for seizure first-aid and education, a toolkit or strategic plan to increase equity and inclusion in the epilepsy community, an advisory board of epilepsy healthcare professionals, and support for those who aren’t able to receive proper care.
What support do you have in place?
I am an ambassador for the Epilepsy Alliance of Louisiana and I partner with other non-profit organizations such as Angels of Epilepsy and Epitome of Epilepsy. Ultimately, my family is my greatest support system.
Experience with neurologists
I have had an overall positive experience with my neurologists. After my first neurologist retired, my attempt to find a black female neurologist was not successful. This is another reason why I began my organization, to raise awareness about the lack of diversity in epilepsy healthcare and advocacy.
Read more: Epilepsy in the African American community
Experience with the Epsy App
I currently use Epsy as a reminder to take my medications and to track my seizures. I also read blogs about others’ experiences with epilepsy, as well as information about epilepsy.
Epsy is the leading epilepsy management app, free to download on iOS and Android devices.
Tia’s message to others living with epilepsy
My main message to those with epilepsy is to be grateful for the good times, don’t get caught up in things you can’t control, accept it and overcome it. Also, give yourself grace when you are too tired or get frustrated with your condition.
