ABOUT THE CATAMENIAL EPILEPSY FOUNDATION
Our Purpose
How it Started
How it Started
To educate patients, connect women who have CE, and support each other by sharing stories, resources and research.
How it Started
How it Started
How it Started
I started having seizures in 2014 and it's been a miserable ride. I am not alone in this feeling, that is why I started the CEF
Our Purpose
This website, and ultimately the future Foundation, exists to:
1. Educate patients, loved ones and even doctors.
2. Connect women who have CE or anyone who wants to learn more.
3. Support each other by sharing stories, resources and research.
4. A long-term goal of the CEF is to support CE research by collecting donations that 100% go to active CE researchers. This funding recipient will not be chosen by a Board of Directors, but by the patients who struggle with CE on a daily basis.
More information and features are coming. Right now, the CEF is only me and it's a labor of love. Honestly, this is part of my therapy as I learn to accept the past, process the challenges ahead of me and look to help others.
If you have comments, questions, ideas or just want to connect, you can reach me at: catamenialepilepsy@gmail.com.
How it started
Hi! My name is Elise and I have Catamenial epilepsy. I started having seizures in 2014 and honestly, it's been a miserable ride.
Before CE, I was healthy, fit and even tried to be a professional soccer player. It took years to officially be diagnosed with CE and many more years until I found a medication combination that actually worked.
After seeing what felt like zillions of doctors, I realized that most providers don't know much about CE. Broadly speaking, neurologists don't mess with hormones and OBGYNs don't mess with seizures.
I had to take things into my own hands.
I started reading scientific papers, contacted researchers and dug around for anyone and anything that could help.
Thankfully I am now seizure free, but it's been a long, hard and, at times, incredibly lonely journey. Thats why I built this website.
It's a work in progress, and we are not officially a Foundation yet, but my goal is to build a community of people with CE where we can share experiences and resources.
My ultimate goal is to raise funding for research specifically on CE and provide financial support to budding researchers and clinicians who want to work in this field--because we need them BAD!
I AM NOT A DOCTOR but this is my story and I hope it helps!
