Community Forum Archive
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Our story
Fri, 08/02/2019 - 16:31 We our familiy that has struggled with epilepsy for 4 decades plus. Begiinning with myself at a young age. Reaaly didn't realize how much that impacted me, though I knew it did, until looked back on those younger years later. Wasn't till my daghter was diagnosed at a very young age mths old that, truly began struggling with the heartbreak of acceptance again.
To fast forward the story we have had many close calls, many things we can;t remember. I will always wonder how I got out of the ocean that day?
There have been many triumphs, The willingness to strive to thrive to live the best life possible despite the challenges, My child and I are almost copy cat cases. Her seizures worsening at same times mine did. Age of onset etc. we also have mobility decline in common. Just recently we found out this is all genetic and fairly rare. Still we keep hope that a treatment can be found and love to encourage others on the way. Hope your journey provides strength and hope,.
Hi dtg, Thanks so much for
Submitted by Anonymous on Mon, 2019-08-05 - 09:08
Hi dtg, Thanks so much for sharing your story, it sounds like you've been through a lot. It’s important that you express your concerns and any changes in seizure types, frequency, behaviors, side effects and symptoms to your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . It is common for people with epilepsy to report having difficulties with thinking and memory. To learn more about the challenges with epilepsy, visit: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memory It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support,here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concerns . You may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support. Additionally, there are plenty of things you and your daughter can do to reduce these feelings and manage your epilepsy: https://www.epilepsy.com/learn/managing-your-epilepsy and stay safe: https://www.epilepsy.com/learn/seizure-first-aid-and-safety Create a seizureresponse or action plan, which is a helpful tool for those close to you understand what do if you or your daughter has a seizure: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms Tracking your seizures, record your medical history, medications, side effects, moods, or other personal experiences. using a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Have a Seizure alertdevice: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It is also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools