Friday, June 21, 2013

Living Well With and the Living Hell of Epilepsy

For many, many years, efforts to remove the stigma that epilepsy carries focused on a "living well with epilepsy" approach. "Normal" people who also "happened" to have seizures but who otherwise lived "normal" and productive lives were paraded out in advertisements and marketing materials, and while this helped to dispel myths about epilepsy, the approach neglected a significant number of people whose lives were severely affected by the disease. What happened because of that is a woeful under-funding for research into the causes of and cures for the epilepsies, and, equally as important, a lack of knowledge and awareness of just how serious the disease can be, including a higher incidence of death than breast cancer. The mental health aspects of the disease -- for both the person suffering the seizures and the parents and siblings of that person -- are often unacknowledged despite grim statistics, and the work I've done recently with national groups trying to remedy the inadequacies of the healthcare system have only just pecked at the surface. I call that number -- the nearly 30% of people with epilepsy whose seizures are not controlled and whose lives are significantly impacted by the diseases as those who are experiencing The Living Hell That is Epilepsy.

With that in mind, the Los Angeles affiliate of the Epilepsy Foundation of America produced the following video that they showed at their most recent fundraiser. I think it deserves to be seen and shared and would appreciate you doing so if you have a moment.



9 comments:

  1. It's so odd how we don't know this stuff- we who are blessed with children who do not suffer seizures. It's one of those things we'd really like to stay blind to. Because...well. It's too hard. It's too hard and yet so many parents don't have that option. When the boy in the video woke up in the hospital and just that shot of his eye- it could have been my Owen. It could be any of our children. It IS your child.
    I love you, Elizabeth and the way you patiently and lovingly and humorously and sometimes sternly remind us all of a reality we'd rather not face.

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  2. Thank you for sharing this and for being such an outspoken advocate.

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  3. I appreciate your efforts to educate those of us who just don't know. Eliminating stigma is a good thing, but the untended consequences are just as you've mentioned. Like most disease, it manifests in many many ways.

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  4. Wow. Thank you for the education and the reminder of the hell it must be for the families and caregivers of those with severe seizures like Sophie. It's impossible to know unless you live it and it puts so much in perspective. My compassion for you is overflowing. The video is excellent. Sweet Jo

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  5. Sharing my bed with my boy who is finding his way out of the living hell of epilepsy again tonight. I will share, because I want a cure, I would like very much for this living hell to leave him alone.

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  6. That is a very effective video. Those of us who don't live with epilepsy every day need this kind of reminder. Thanks for posting, and for all you do on behalf of Sophie and others like her.

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  7. I continue to maintain that the more we know about the individual lives of other people - their true stories and struggles and triumphs - the better off we all are. I will certainly share this video. Thank you for bringing it to my attention.

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  8. Thank you for sharing this video, and for working to draw attention to the daily struggles for the families and those living with epilepsy. The video is very powerful, and yet I feel it can barely scratch the surface of the reality you know too well. Like Sweet Jo, my compassion overflows too.
    xo

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  9. I knew next to nothing about epilepsy before finding your blog. Your work is valuable and your voice is effective. The video is very moving - thank you for sharing. My heart just breaks for Sophie's suffering.

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