This post is part of the Epilepsy Blogger Relay™ which will run from November 1st through November 30th.
One day, when Casey was only 14, she suddenly woke up confused, with her face in the dirt. Her mother stood over her, terrified. Shortly after this event, she was diagnosed with epilepsy. Like many people with epilepsy, for years Casey chose to keep her disease a secret. Now, however, this has changed. The vulnerability that she felt as a teenager with a neurological disorder has evolved to motivate Casey to be open about her epilepsy, and to work to increase awareness of epilepsy for everyone. She is now employed as a case manager for the Epilepsy Foundation of Greater Chicago hosting employment workshops, facilitating workshops for siblings of children with epilepsy, and engaging with the community at large.
My name is Casey Nunes and when I was 14 I had my first convulsive seizure. What started as a few twitches in my left hand soon had me horizontal on the sidewalk on a Sunday morning. I think if we were as educated as we are today about epilepsy, then it would have been recognized much sooner. I’ve been fortunate to have lived in the Chicago area my life, surrounded by world class epileptologists and research studies.
When I was 14, that didn’t matter to me. It’s hard enough being a teenager – I didn’t really care about anything but pretending to be “normal.” After high school, I received my Bachelor’s degree in journalism and entered the AmeriCorps program, serving at a local non-profit.
I first worked with returning citizens, people recently released from prisons who were trying to go back to work; I helped adults learn how to use the computer for the first time; and I helped start a coalition of food pantries within the surrounding neighborhoods. I was awarded the Raul Yzagguire AmeriCorps Member of the Year in recognition of my service and a Spirit of Service award. The experience I had working with AmeriCorps changed the course of what I wanted to do, and I continued my path in non-profits.
Eventually I ended up working at the Epilepsy Foundation of Greater Chicago, where I still am today. I have been humbled by the people I meet every day and grateful that I am able to help. I’ve organized four years of Epilepsy Awareness Advocacy Days, bringing dozens of people to the Illinois State Capitol to talk to legislators about the need for epilepsy funding and access to medication.
I have heard so many stories from parents about their child’s need for equal education, siblings trying to understand what a seizure is, and individuals who just want to be normal. Some of the most frequently asked questions I get are about employment and rights around the Americans with Disabilities Act.
Education Enrichment Fund
Recently, I was a recipient of the 2017 Education Enrichment Find scholarship, made possible by CURE: Citizens United for Research in Epilepsy and Lundbeck. I plan to use my Education Enrichment Fund (EEF) Scholarship to further my mission and remain engaged with CURE through a podcast I will host monthly about epilepsy. It kickoffs in November for Epilepsy Awareness Month and we will go through a range of topics each time, interviewing experts in the field and personal stories.
The November 2017 Epilepsy Blog Relay™ was sponsored by Lundbeck – a global pharmaceutical company committed to improving the quality of life for those living with brain disorders, including epilepsy. Lundbeck connects people living with challenging seizures at www.LGSTogether.com and through the LGS Together Facebook page.
The Citizens United for Research in Epilepsy (CURE) and Lundbeck Education Enrichment Fund (EEF) Scholarship is a one-time scholarship (up to $5,000) to cover tuition, books, and course materials for those living with epilepsy, or for family members and caregivers of those impacted by the disease. The scholarship is to be used toward coursework advancing personal knowledge in research, health education, advocacy and/or awareness in relation to the recipient’s experiences with epilepsy.
NEXT UP: Be sure to check out the next post tomorrow by Soo at https://soosepilepsycorner.blogspot.com/. For the full schedule of bloggers visit livingwellwithepilepsy.com.
TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.
Sorry to read your story Casey. I, Terry from Bristol, England, also has epilepsy. I’ve had it since I was 14 months old. I am now 51 & still have seizures.
My son is 19 he has epilepsy because of brain surgery when he was 12 . He has no life to scared to go out ive been trying to get PIP for him .which has been the hardest year of all our lives . Its not fair people need to understand what we all go through . Epilepsy is the most horrid thing