Learning about epilepsy – beyond the statistics
by Monica Caldwell
Hello! My name is Monica Caldwell and I’m the Client Care Manager for JoshProvides Epilepsy Assistance Foundation.
I’ve been with JoshProvides for a little over two years now, and it’s been a joy and a great learning experience.
When Andria Bilan, CEO of JoshProvides, reached out to me in August of 2022 to let me know that they were looking for a client care manager, I didn’t know much about epilepsy. I have a lifelong friend whose adult daughter has epilepsy, and a college friend who started having seizures in his mid-20s, about a year after his identical twin began having his seizures.
Other than that, my personal experience with epilepsy was nonexistent, and I’m not aware of any family members who have epilepsy.
Fast-forward to today, and I have learned so much! I learned that 1 in 26 individuals will have seizures at some point in their lifetime, and that epilepsy is the 4th most common neurological disorder. Epilepsy can strike anyone at any time. Epilepsy can be managed with drugs and lifestyle changes but there is no cure for it. Epilepsy can be inherited, but people with no family history can also suffer from it.
These are very important statistics and facts, but more importantly, what I continue to learn each day cannot be found on Google. As I speak with members of the epilepsy community – we call them Purple Warriors – I learn of their everyday struggles, things that most of us take for granted: transportation to medical appointments and daily errands; paying for expensive anti-seizure medications; being unable to work because of seizures; worrying that a child will have a seizure at night, or while they are in school; terrified about the possibility of SUDEP (sudden unexpected death in epilepsy).
Working with individuals and families who deal with epilepsy has expanded my empathy for others and strengthened my desire to help those in need. As the point person for inquiries, I determine the clients’ needs and provide them with opportunities to access our grants or refer them to other organizations for help when we cannot meet their needs.
I love working with the Epilepsy Support Group, identifying and booking guest speakers and facilitating the semi-monthly virtual meetings. The meetings have afforded me an even greater understanding of the daily challenges of people affected by epilepsy. The support and love that our members show to one another is truly inspiring to me.
I’m grateful to Sandi Chapnick, JoshProvides co-founder, and Andria Bilan, CEO, for introducing me to this very worthy and compassionate organization. I’m honored to help those in our community, and to educate and raise awareness about epilepsy.
Please reach out to me via our website: https://joshprovides.org/ if there’s anything you need, or if you would like more information about JoshProvides.
