Epilepsy Facts

  • Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Over 300,000 school children through age 15 have epilepsy. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 65,000,000 people worldwide.
  • In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
  • One in twenty-six Americans will develop epilepsy at some point in their lifetime.
  • Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
  • In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
  • The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.
  • It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents—more than die annually from breast cancer!
  • The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater.
  • Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, mental retardation, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
  • There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.
  • Historically, epilepsy research has been grossly under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
  • For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence. 
  • SUDEP: SUDDEN UNEXPECTED DEATH IN EPILEPSY FAQs


8 comments:

  1. hi
    my 2 year old daughter was just diagnosed with epilepsy 2 months ago. it started last january(2011) she had 2 seizures(grand mal) within like 5 hours of each other. the doctors did an EEG and said it was normal. the next seizures weren't until this february(2012) and the same thing happened, 2 seizures within hours of each other. the doc put her on Dilantin, they also did an EEG and MRI on her and the tests came back normal. I am so confused as to why this is happening. Anyway, i wanted to tell you that i read your posts and i hope they are able to help your boy. I did an Epilepsy walk this past Sunday and donated in hopes that they will find a cure.
    All the best to you and your son!

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  2. dear jackie,
    if you have any questions about epilepsy and seizure drugs you can contact me. fortunately and unfortunately i know a lot. where do you live?
    christy

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  3. Hi Christy,

    I live in South Africa and although I am young...not used to blogs :-).

    What brings me to yours is my sister-in-laws' son. He was born normal and everything was fine up untill 3 months. I can still remember his first smile. He also has blue eyes and blond hair.

    Soon the nightmare started (if I think back I can't even place everything in order anymore), he was diagnosed with reflux and operated. While in hospital that extreme swine flu epidemic hit us and he got it! With fever he started getting fits, due to medication and treatment he got fits...to see such a small child with a stif body and eyes flickering and you can't do a thing is a very powerless feeling but he was a little fighter.

    At 7 months he spent more than half his life in the world in the hospital. None of the epileptic medicine they tried helped and they gave him stronger volumes than a 16 year old should get. By the time he got home the whole family was so excited :-). From the outside he is beautiful and you almost tend to wonder how it can be that there's something wrong in the inside, doesn't it?

    From there was a looong process. He is now 3 years old and the doctors could not discover the reason for his fits. Only after his third birthday can he sit on his own. His parents got him of the medicine as soon as possible. He looked like a zombie on it, spacing out completely. He reacted like a druggie and got withdrawal symptoms shaking so they had to do it ml by ml. Now he smiles again but not yet focusing. About two months ago he started eating like a big boy and we only use the mik-key (tube directly to stomach) for his 21h milk and when he's ill. He is also on a very strict diet combined with homeopathic drops and powders it really made a BIG diffirence.

    Although I'm not his mother he has stole a piece of my heart. It is nice to see when you are not alone, thank you for the blog. I'm trying to read up on what to expect as he gets older...but I believe God has a purpose for him and with us all. The doctors told his parents he will never improve and we believe through prayer he has and will continue to do so.

    Regards,
    Mariët

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  4. dear mariet,

    thank you for reaching out. i am glad you found the blog.

    first of all, in my opinion the doctor's don't know everything, so when they say he (what is his name?) will never improve they are talking out of their behinds. at least if that is what they believe they should tell you that he MIGHT not improve, not that he WON'T. they are not gods.

    secondly, i am not a religious person but i think that prayer and positive thinking feeds the soul and any kind of good energy, in my opinion, can't hurt and will likely help. so keep the faith.

    i am sorry to hear that the doctors felt that his reflux was bad enough for surgery. we are very lucky in that calvin's pediatrician, for the most part, believes in the least invasive course of action. having said that i understand that sometimes surgery is the only option.

    just so you know, that in seventy percent of people with epilepsy the cause is unknown. you and your family are not alone.

    i must also ask if your nephew has tried the ketogenic diet? if not, you must search out a good hospital, pediatric neurologist and dietician and try it. it is the only known cure for epilepsy. it is not easy to administer but like anything that is difficult, it just takes getting used to.

    the fact that your nephew is making progress with sitting up and eating like a big boy tells me that he IS improving. and, there are new treatments coming down the pipeline constantly.

    does he have a good neurologist?

    yes, these little kids do steal our hearts, don't they?

    i hope you find a treatment that lessens his seizures or helps him be seizure free. remember, seizures beget seizures so trying to stop them or slow them will help prevent the disorder form advancing and burning out of control.

    and, i hate to mention this but if your nephew's neurologist has not mentioned it you need to ask about SUDEP (sudden unexplained death in epilepsy.) it is something everyone with epilepsy and everyone caring for someone with epilepsy should be educated and informed about.

    take good care and keep in touch.

    christy

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  5. I have had Epilepsy my entire life. Its a struggle daily. I hope your son can one day enjoy a seisure free life. May you stay as strong as you need to, to wake up every day and love , laugh, and smile big! xo
    Tina S.

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  6. thank you for writing, tina. i am sorry to hear that you struggle with epilepsy, too. you are very kind to reach out. please, if you wish to help me share calvin's story you can find me on facebook and "friend" me. take good care and i will try and take your advice!

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  7. My 16 year old son died jan 9th from seizures. He was on life support for 5 days. I found him unconsious on his bedroom floor. No one told me he could die from a seizure. I think they put him on life support hoping for organ transplant which I did let them do. I am thankful I had those five days to touch him and talk to him

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  8. dear anonymous,
    i am so sorry for your loss. if your son had epilepsy his neurologist, in my opinion, should have told you it could be lethal. too many neurologists do not broach this subject. so many people are in the dark about how heinous seizures can be. i wish there was something i could do to ease your pain. i am glad you had that time with your son.
    christy

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