Thursday, May 24, 2012

A Lesson

Sudden Unexpected Death in Epilepsy (SUDEP) is now recognized as the leading cause of mortality associated with epilepsy, outside of status epilepticus and underlying etiologies. The general level of awareness of SUDEP has risen considerably in the last several years, but the general public is still largely unaware of just how devastating a diagnosis of epilepsy can be. In fact, not even professionals devoted much attention or research to it until the early 2000s.

Risk factors for SUDEP include the early onset of seizures, frequent generalized tonic-clonic seizures (those previously known as "grand mal"), young adult age, poor compliance with an anti-epileptic drug (AED) regimen and multiple AEDs used. Patients with epilepsy have a significantly higher rate of mortality than the general population, and SUDEP accounts for 8-17% of the deaths of people with epilepsy.

I know of seven children and young adults whose death was determined to be from SUDEP.

We can all manage our fear (and trust me, I do fear) by educating ourselves and advocating for increased research about SUDEP. In late June, Partners Against Mortality in Epilepsy is holding a conference about SUDEP in Chicago. You can read more about it here.

Now I'm going to have a swig of vodka.


  1. indeed, you have. it is an odd existence, balancing this knowledge and resulting fear, with the acts of daily living...i remind myself that though I have life-threatening health issues, one of my healthy family members could be fatally struck down by a city bus at any moment...makes me feel better. :-)

    and then, of course, there is the vodka.

  2. As much as it makes me want to dial up Ralph on the big, white, porcelain phone, I'm grateful you posted this. I think it's a widespread misconception that epilepsy is always treatable with medication, and isn't a potentially life-threatening condition.

    But ick. Shots all around for all the moms and siblings and family members and friends who live day in and out in hypervigilance. Peace and blessings to those constantly pleading and petitioning with whomever's at the helm of this crazy as universe for a cure; a relief from the terror, a tolerable, minimally invasive, life-giving elixir.

    God help anyone in pursuit of a means to subdue misfiring neurons. That someday soon their efforts might release minds held captive by malicious seizure shenanigans for far too long.

    And to those who have lost children, i beg with my whole heart and then some, that they find the comfort and healing they so truly, desperately deserve.


  3. Love to you, brave mom. I don't know how you do it.

  4. Oh honey.
    Your courage puts me in mind of Sacagawea.

  5. There is just nothing to make this ok, is there.

    You and Sophie and the entire family are in my thoughts & prayers.

  6. You are a tremendous advocate. Thank you for the education.

  7. It IS scary. Wow.

    Our next-door neighbors lost their daughter to SUDEP. They appear at the beginning of this video for an organization called Epilepsy Bereaved in England:

  8. this sends chills up and down my spine for both of our girls. i only recently learned about SUDEP. My daughter has every risk factor except for the non-compliance with meds one. i always feared her going into status in her sleep and finding her dead in the morning. now, i have SUDEP to worry about too. in my heart, i know that this will be what ends her life here on earth. i just know it. we all will die, and i believe this will be what she dies from.... i can only hope its just a long long long way off. so scary.

    thanks for informing the readers. big hugs to you. sorry if i freaked you out even further with my comment, but i just figured your mind probably isn't in denial in your world either...

  9. I will be joining you at the vodka bottle.

  10. That is beyond scary - I don't know how you do it - vodka isn't THAT good.

  11. Thank you for sharing such important information. I will be sure to pass the link along because I think that the two things (beyond vodka and chocolate cake) that can keep us sane in the midst of such things are education (about the issues) and community.


  12. i have read about this before, from a blogging mother who lost her son in this way. he was in his 20's, living an active life, and engaged. thank you for always educating us about a disease that affects your life every single day.

  13. Hey Elizabeth - thought I'd add that (as you know) Owen's death was listed as SUDEP but everyone agreed it was a diagnosis of elimination. He'd had a history of very light absence seizures when he was an infant and we hadn't seen one in many, many years. The word 'epilepsy' had never been used until his death.

    It's definitely reasonable to say his death was indeed sudden and unexpected/unexplained - but there was nothing to specifically point to this conclusion other than the fact there was just nothing else to point to.

    Just for what it's worth. It's possible not all SUDEPs are SUDEPs.

  14. Thank you Elizabeth for educating the world on SUDEP. This is a darkness that effects our family too. Each time we visit Nicholas's Neurologist they give us a form to fill out that always includes a reminder of the potential for SUDEP. I don't think a family could ever forget this threat. Thank you again for your important and informational lesson.



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