Catamenial Epilepsy Foundation
Educate. Connect. Support. Advance Research.
Catamenial Epilepsy Foundation
Educate. Connect. Support. Advance Research.
You Are not alone.
Over 42% of women with epilepsy have Catamenial Epilepsy (CE). You may not grasp what your body is going through. You might be struggling to get the care you need. You may feel alone, but you are not.
What is Catamenial epilepsy?
Catamenial epilepsy is a form of epilepsy in women where seizures are exacerbated during certain phases of the menstrual cycle.
About the Catamenial epilepsy foundation
This website exists to:
- Educate patients, loved ones, and even doctors.
- Connect women with CE and support each other by sharing stories, resources, and research.
- Support CE research by collecting donations that 100% go to active CE researchers.
What will make the CEF unique is that the patients who struggle with CE on a daily basis will be the ones who decide where the funding goes. YOU and ME and those who support us.
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!