Growing up with epilepsy, I had no idea about the information my doctor was looking for. I was extremely nervous about my appointment with my neurologist, wondering if I would answer his questions correctly, or if I should even answer his questions honestly.
Sharing information about my epilepsy diagnosis was hard for me as a teen, as I tried to be a "good little girl." Living with refractory epilepsy - meaning my seizures were not being successfully controlled by my prescribed anti-seizure medications - was hard, as I was asked or told repeatedly by everyone when I had another seizure:
"Did you forget to take your medicine?"
"Did you not get enough sleep?"
"Leigh, you need to see your doctor."
I became conditioned to expect those questions to be asked. Having uncontrolled seizures made me feel like I was always doing something wrong.
Yes, sometimes I would forget to take my medicine. Most people with epilepsy do at one time or another. We are human.
I tried, as everyone with epilepsy does, to get enough sleep, but work, school, stress, or social events sometimes kept me from getting the rest I needed.
And, I was seeing my doctor - every 6 months or so, as prescribed.
What I didn't know was how to talk with my doctor and provide him with the data he needed to make a more accurate diagnosis and treatment plan sooner.
Our Empower Your Life Conference, taking place on Saturday, October 19, 2024, was created with that issue in mind. It walks people with epilepsy and their loved ones through their epilepsy diagnosis and treatment plan, teaching them the "language of epilepsy," how to talk to their doctors, and how to keep track of and provide the data their doctors need.
One Empowering Epilepsy community member said, after our 2019 conference:
"I saw information about the Empower Your Life Conference in Cleveland which was a few months away, and RSVP’ed for two, and booked plane tickets from Chicago to Cleveland. I expected the conference to be...you know...nice. We would make some friends, and maybe pick up coping pointers, learn about new therapies. Maybe I could start an Empowering Epilepsy-Chicago branch, after talking to Leigh Goldie, the Executive Director. No exaggeration, in the first hour of the conference, my husband and I learned more about epilepsy than in the prior six years. I feel like I’ve been brought into the light, and given competence and confidence as an epilepsy
care-giver, and hope that others struggling with this baffling disease can experience the same."
Please make sure to check out our Empower Your Life Conference to review our speakers and their presentation topics. Yes, it's a full day conference, but it is one day of your life that can help you find proactive ways to reduce your seizures and help you discover what you can do while living with epilepsy. We hope you can join this must attend event!
ความคิดเห็น