Monday, January 18, 2010

A Tutorial

I write about my daughter's epilepsy a lot, and most of that writing is very personal. Sometimes people email me with specific questions, and I realize that there is very little on this blog that is educational in the specifics of epilepsy. I might have posted once, a long time ago, what you should do if you see someone have a seizure (and I can't find that post), but I don't think I've given many statistics. So this post will be useful, I hope, and a bit dry, but I'll probably manage to put in a few personal bombshells. I hope it's a little shocking.

Here are some statistics:

1% of the general population has epilepsy. That's a heck of a lot of people, no?  You can have a seizure and develop epilepsy at any time in your life. Epilepsy is more common than parkinson's disease, multiple sclerosis and cerebral palsy, combined. That doesn't mean very much, and it certainly doesn't take away the seriousness and tragedy of those other diseases, but a point should be made that the research money allocated toward epilepsy is woefully below that of other, far less common illnesses that affect far fewer people.

Of that 1%, about 70% have good control of their seizures through medication, surgery and/or lifestyle changes including diet.

Over 30% of people with epilepsy struggle to control their epilepsy and are resistant to current medications. That's the population that my Sophie is within and her epilepsy has been refractory to eighteen drugs and the ketogenic diet. She is NOT a candidate for surgery. In fact, infantile spasms, the rare form of epilepsy that Sophie was diagnosed with at three months of age, is still treated in much the same way as it was fifteen years ago. Despite a few new drug advancements for the disorder, the outcome remains quite bleak. That's depressing and frustrating. 

In the almost fifteen years since Sophie was diagnosed we have seen amazing technological developments in our world:

The Internet/World Wide Web
CDs and DVDs
Cell Phones
Digital Television
Tivo and DVR
The Prius

For the past fifteen years, children diagnosed with infantile spasms are treated in relatively the same way as Sophie was -- unsuccessfully. I speak, at least once a month, to parents of children with either newly diagnosed seizure disorders or who have had uncontrolled epilepsy for years. Many of these children are on multiple drugs and are still seizing.

I find this unethical. We have chosen NOT to continue to drug Sophie when those drugs don't work. This is not acceptable to many doctors and to many parents. Fortunately, Sophie doesn't have the type seizure that goes on for "too long," (the type seizure that can cause severe brain damage and death). We have had to balance the two evils: seizures and side effects. We have often chosen seizures.  

Epilepsy in America is as common as breast cancer and kills as many people. I'll type this very, very small because I can be very, very superstitious, but SUDEP (sudden unexplained death in epilepsy patients) is more common in patients whose seizures are not controlled and who are on more than one medication to control those seizures.
Do I sound frustrated? I am.

I work part time with an organization that strives to improve the quality of and access to healthcare for children with special needs, and children with epilepsy are one of our main concerns. These children and their families are legion, and the disease has been neglected for too many years, probably due to stigma and its often grim prognosis. The work this organization does is noble and much progress is being made.

I am also on the board of the Epilepsy Foundation of Greater Los Angeles, and our chapter is doing a lot to improve the quality of life of those who live with epilepsy and their families.

More must be done, though, and awareness is where it all starts.


  1. 30% struggle to control their epilepsy. Thats a huge percentage.

    There should be much more awareness and research for seizures. Even diagnosing specific kinds of seizures can be tricky if doctors are not well informed.

  2. I am astounded at those stats. You mentioned on a comment on one of my posts about how people think epilepsy is no big deal because the "advertising" has always been so "upbeat"...that's true you know. I was one person who saw it that way...thought I was really progressive for thinking that way too...this needs better awareness, but how do you do it? The fact that treatment options remain so narrow really is unacceptable.

  3. I know this is not the kind of awareness you're referring to, really. You're talking about proactive awareness. But when I read this, I thought how awareness is really a key word for many things we shush away from our life, like sickness, loss, disability ... Awareness at large. I had a former parter with very mild epilepsy: after a seizure, he'd feel drained physically (that's how he knew he'd had one) and especially emotionally: he was so, so ashamed.
    PS I'm reading E McCracken, thank you so much for recommending it!

  4. you are so right. awareness is the door that opens hearts, minds, and through this, finally much sought after change.

    your post is powerful for all these reasons, and so much more.

    thank you for every way you continually share intimately of your life, your sophie. you are touching so many peoples hearts,and nurturing understanding.

    i am just beginning to share about my life with a raw genetic disorder, with the same hope of awareness.

    thank you. you inspire me daily.

  5. thank you for the information Elizabeth .... no wonder you are frustrated.

    ... and even though your blog may not be full of facts and figures and specifics - I have become very well educated in my heart. That's where action and awareness starts. Becoming attached to a person and her family and caring deeply for her outcome ..... it starts there.

  6. This is an excellent and informative post--not that your others aren't--but this one is such a good measure of your advocacy abilities. I appreciate all the stats, all the info, all the hard-lived experience behind this.

  7. I always thought your blog and your writing about epilepsy was very educational, particularly because of its personal nature. People (in general, anyway) relate to stories much more than numbers and statistics. Giving a name to epilepsy and putting a face on it brings home its grave reality. I was shocked by these statistics, and I think it's important to put them out there for the world to see, but when I read about Sophie's seizures, it makes my heart sting and I feel a sense of urgency to do something about it.

  8. I had no idea it was more common than MS. OF course you are frustrated, pissed, exactly how I would feel. Thank you for this information.

  9. You have taught me so much about how to be a passionate advocate for someone you love. The way literary creativity continues to gush through you also awes me.

    I cannot believe the word verification code for this post: "Anticalm." !!!

  10. Also -- thank you for the "dry detail" to educate and re-educate us. We need to know it, tell it and spread the word. I had a good friend in elementary school with epilepsy. My mother developed a seizure syndrome in her mid-forties. Scariest thing I ever experienced.

  11. Thank you for this. I had no idea it was so common. It just seems criminal that there is no effective treatment for infantile epilepsy.

  12. Awareness is everything, and I find the rise of technology and hybrids, etc., more than a coincidence!

  13. I have so much to say that I'm considering writing a post in response. Our Clay has a different diagnosis than epilepsy, but a lot of the same applies. When he was about 10 months old he was on a lot of meds for a few months and then I just said, "No! No! No! Enough!" Never again. I think the hardest thing I've found is trying to convince people in the community that a few seizures are okay. I'd rather him have a few than be on too many meds. But, some would say this is irresponsible of me. Oh well.

    Thanks for helping us be more aware today.

  14. Great post.
    I can't even imagine how frustrating and overwhelming.
    It all expecially hit home when I saw your list of all that has changed and been invented in the last 15 years.
    Unethical is a great word for it.
    I'm glad you are working so hard for change. I just wish it wasn't so excruciating, all of it.

  15. I echo the sentiments of the caring women above me.
    And for what it's worth, your mix of facts and personal testimony has changed my perception about many things.

    You stand as a hero in my eyes.

    If my screaming in frustration helped I'd be hoarse for you, my friend.

  16. To speak the language of awareness we need first to understand the language of empathy. There is no empathy where there is no money for pharmaceutical companies. And since this is not "a serious" illness according to those who do their books, there is neither the impetus nor the interest in making others aware or for them to progressively encourage their scientists to advance in their research. They keep on throwing meds like wrong size shoes in the hope that if it doesn't fit it can be blamed on the foot and not on the size of the shoe.

    We have created the Internet, we are capable of using satellites to communicate but we apparently are not sufficiently valuable - according to them - to be worth the investment in research and development. Let's face it, our society is turning a deaf ear to that which we don't understand and rather than appearing ignorant we choose to appear indifferent. Thus goes our humanity.

  17. This post was terrific and very educational indeed. Thanks for the context.

  18. Thanks for posting. I didn't know a lot of these statistics. My housemate in Seattle had epilepsy, which he had under control, but as a child his mother used to lock him in the closet and call the priest because they believed his seizures meant he was possessed. So much misunderstanding. Hopefully, with information out there, that doesn't happen anymore.

  19. Elizabeth this is so important and of course I knew none of it.

    I know you did a post about what we should do if we saw someone have a seizure. And again the harder I try to remember what you told us to do the more I can't remember it. Can you repost it when you find it. Maybe the more we see it the more we will do.

    I don't blame the anger. There is no money in fixing our children therefore no advancement.

    Love you.

    Renee xoxo

  20. Thank you for this information. I am woefully uneducated about this illness.
    Of course you are frustrated. Of course you are. I am frustrated just reading about it, and I don't live with it.
    Sending love to you and your family.

  21. Thanks for sharing these facts. It is interesting about how much technology has changed but not the treatment of many diseases. That's something I think I'll be churning over in my head for awhile...not that I can personally do anything about it.



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