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Epilepsy Awareness Month: I Am More Than My Epilepsy

We will celebrate Epilepsy Awareness Month by honoring each individual's unique journey, recognizing that epilepsy is just a part of one's story, through the theme of: "I am more than my epilepsy."

Join the discuss by sharing why you don't let epilepsy get in the way of who you want to be. Your goals, successes, joys โ€“ why haven't you let epilepsy stop you?

  1. I have had epilepsy all my life. Had an exploratory surgery when I was 7, then a gliblastnoma 6 years ago. I no longer work. I do serve at my church and show people that you can have epilepsy and a life!

    1. Hi there! I am glad to hear you are living life to the fullest regardless of your epilepsy. It is awesome that you serve at the church. You are a great example!! Keep doing what you are doing!

      Derra Howard
      Patient Leader

  2. I have had epilepsy since I was 13 years old, at the time they thought I would grow out of the epilepsy. I didn't I wanted to be a mother so much. I was so excited when I found out I was pregnant my husband was too. Imagine when we went to hear our baby's heart beat and the doctor telling you, that you lost your baby had a miscarriage. I blamed myself and took it hard. We tried again and were able to have a baby this pregnancy made me so sick all the time but so worth it. We had another baby and were so excited. After having this baby my epilepsy started having issues. It was hard. When I have seizures I have multiple ones in a month. I tried to just be a mother and do what I could. It started to get so bad that I lost my drivers license and had to go stay in the hospital for tests 4 times. One was a brain surgery and I was miserable. Each stay I couldn't get out of bed and had a camera on me. I didn't see my kids. They would want seizures to happen. I remember one year my seizures were so bad I would have one or two on the same day and get concussions and it would happen every week. I would have to get stitches have sores on me. I hit my head so many times I couldn't lay flat without screaming due to feeling of spinning or being on roller coster. I was told to wear a helmet. I had to go through many medications cause my body didn't do well with them. I remember the doctor saying we only have 2 more medications to try. I was so scared. Knock on wood it worked . I have to take three different seizure meds and a vns . I finally after 10 years knock on wood was able to get my drivers licenses back. Now how do I keep my life so its not just epilepsy, I spend a lot of time with my family, my sweet children that I treasure, I went to college and graduated with two associates degrees no one thought I could, I volunteer at schools, I had jobs that I loved that I enjoyed. I look as myself as normal. I love working with special needs children and adults. I love playing basketball. I don't let epilepsy get me down. I can still do what I want to.

    1. I'm a man, and have been epileptic my entire life, but my wife and I were concerned about how good of a father I'd be. I haven't driven for decades, so I can't help with chores like driving her to school, baseball practice, violin lessons, friends, etc. But we've got a system that Alana gets everything she needs, and being a father is my greatest joy. Us going to a Father-Daughter dance in grade school.

  3. , Thank you so much for sharing! I am so happy that they are getting closer to a successful care plan. Always remember you and your daughter are not alone. We are here for you!
    Happy Epilepsy Awareness Month.
    Gabrielle - Epilepsy Moderator

    1. I am Michelle Gable Iโ€™ve had seizures since I was 6 months old later on in life I was diagnosed with epilepsy I was controlled for years then I had my daughter which is now 14 and my seizures havenโ€™t been controlled since she was born however right now they are getting closer Happy Epilepsy Awareness Month to my brothers and sisters ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ

      1. , thank you so much for sharing with the community - so happy to see you that you've found the community and seem to be doing well. If you'd ever like to share more of your story, you may visit this link at anytime: https://epilepsydisease.com/stories/new


        Wishing you all the best and a happy Epilepsy Awareness Month ๐Ÿ’œ -Kailah (Epilepsy Team Member)

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