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When the Epilepsy Foundation of Florida told me they wanted to publish my story in their issue at the beginning I was hesitant. I asked my mom and she said yes. Once the days went by I knew writing again will bring me back to memories I didn’t know existed. I had to question my parents and listen to things they went through. Afterwards I remembered why I even started a Facebook group about Epilepsy.  I started my group to bring epilepsy awareness, to bring hope to caregivers and give strength to anyone battling epilepsy or anything else.

Hi my name is Yesenia Carmenate, I’m 32 years old and five years ago I was diagnosed with Autoimmune Encephalitis. On April 8, 2012, I had started feeling bad but never said anything, the biggest mistake I ever made. On April 16, my life forever changed. I had my first seizure at 7:45 am at home, it lasted twenty minutes. Thanks to God it happened while I was getting ready for work and not while driving to work. In a period of two months I was transported through five different hospitals. I underwent numerous testing from special lab testing which in total were 92, MRI’s, Ct Scans, ultrasounds and x-rays. Through my stay I had 57 seizures, blood transfusions, blood clots located in my heart, lung and left leg. I went through stages of insomnia, unable to speak, eat, walk or recognize loved ones. Ultimately at Jackson they were able to establish a diagnosis. On my 28th birthday, May 30th, 2012, I had my last seizure that lasted two hours long. On June 19, I was sent home, but my parents were told that I would be in a “Vegetative state”. They were just happy to take me home, my mom asked “How can I learn 21 pills?” the nurse said, “Trust me you will learn”. My mother became my caregiver while my dad was the bread maker. A lot of people gave them advice and even told them to change our living room to a hospital facility. But my parents were strong and said “No”. They kept my room as it was. My mom would take me to all my doctor’s appointments. She taught me to talk again, write and got me physical and occupational therapy that I needed. I was in a wheel chair for a year. I started to remember certain things when I would walk with a walker, look through pictures and things people told me. Now four years later, I take one course at a time to be a teacher. Still have memory issues and balance problems. Have follow ups with my Neurologist, Hematologist, Cardiologist and even a Psychologist. I learned to seek help and not be ashamed to ask for help. Thanks to God I have been seizure free for four years. My best suggestion is stay strong, have faith, surround yourself with positive people. Remember what you are going through, “You are not alone”.

 

Ilana Bitton

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