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Epilepsy Blog Relay: Leila on PAME and SUDEP

This post is part of the Epilepsy Blog Relay™, which will run from November 1 to November 30, 2018.  Follow along!

Leila on PAME

Over the summer, I was fortunate to attend the Partners Against Mortality in Epilepsy conference with Living Well With Epilepsy founder Jessica Smith. It was an interesting and meaningful way to come together with others in the epilepsy world to discuss and address SUDEP, with the ultimate goal of reducing and eliminating Sudden Unexplained Death in Epilepsy.
I attended plenary sessions where all attendees gathered to hear a group of speakers, and small breakout sessions on a variety of topics related to SUDEP and epilepsy. Those who attended included those from the medical field, pharmaceutical industry, social services, therapists, researchers, and loved ones whose family members have passed from SUDEP. Every story I heard was moving–hearing stories in person was so moving. I’m always sad to hear these stories but was all the more inspired by the strength of those who are telling them.

A bit of hope

It filled me with hope to hear from the professionals doing research on SUDEP and the progress that is being made each day. We are learning more about SUDEP, the specific markers they look for in the brain when identifying SUDEP, and how seizure detection is advancing. It is safe to say that the epilepsy community at large is growing and we are using that growth to support each other in so many ways. I can’t imagine how much more we will know when the next Partners Against Mortality in Epilepsy conference is held.

Leila’s take on Living with Epilepsy

I know I cannot go back in time and change events. I know that epilepsy has also had a positive impact on my life. And I know that no matter how I look at it, my epilepsy is not going away.  So, this is when I rely on my loved ones, to help me through the days I struggle.

I rely on the epilepsy community, to remind me that life is not all bad with epilepsy. And I rely on myself to ultimately pick myself up, put one foot in front of the other, and move forward with my life. At the end of the day, epilepsy has impacted life in good and bad days. The only way to get through the bad days is to focus on the good.

Special thanks to the Danny Did Foundation who provided gratis registration to the PAME Conference, which made our attendance possible.

NEXT UP: Be sure to check out the next post by Lily at livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on December 6 at 12 Noon ET.

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!

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Follow Leila Shields:
Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.

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