Epilepsy Talk

Who’s at Fault?  | March 29, 2024

Instead of humane and compassionate treatment, doctors, hospitals and the legal system are treating epilepsy patients with little or no regard for their condition.

Here are some chilling examples:

A Dearborn doctor falsely diagnosed hundreds of kids with epilepsy and was richly compensated ($350,000 extra!) for “bringing business to the hospital.”  Many of the children were put on dangerous drugs that made them sleepy and in some cases suicidal.

A British man was abused by Christian Brothers, and locked in a mental hospital for 33 years as an “epileptic”.

A woman in Pittsburgh was handcuffed, shackled and restrained during an epileptic seizure because the police suspected her of being on cocaine.

A hospital in England admitted that a doctor misdiagnosed epilepsy or over-prescribed drugs for 170 children.

A woman had her Dilantin level ramped up – due to erroneous blood tests — and she ended up in a different hospital the next day on life support.

A 5-year-old boy died after being given seven times too much of an anti-epilepsy drug.

It’s interesting that whenever a crime or harm is done to a person with epilepsy, or as soon as the person’s epilepsy becomes known, the accused are veiled in immunity.

Any claims by someone with epilepsy that they have been physically abused are written off or ignored, stating that the person cannot function properly with their degree of epilepsy, and that additional treatment is necessary to prevent the incident from happening again.

The degree of the outcome is basically irrelevant, from inflicted emotional trauma, to assault and battery, to robbery, kidnapping, rape, and murder.

And, to add insult to injury, people with epilepsy experience these atrocities at a much higher frequency, because they are regarded as having something “wrong” with them. 

The results of the harm will most likely be written off because the person had epilepsy. Therefore they don’t “count.”

Even the number of witnesses, the degree of evidence, and the presence of law enforcement officials are basically irrelevant.  Most people tend to turn their heads and pretend nothing happened.

Well-documented cases with complete sets of video, don’t sustain punishment, legal action, correction, change in policy or even change in protocol.

And so the blame goes to the victim.  (Are they insinuating that we’re all nuts?)

This resulting denial of “equal protection under the law” is an additional abuse.

It’s sad to know, the very “authorities” who swore to protect, serve and save our lives, can be as deadly as the epileptic seizures we are forced to live with, everyday.

Elsewhere, this country would call such abuse as crimes against humanity.

In most states, having a seizure is technically illegal, and while prosecutions are not many, they do happen.

When prosecutions happen, many states only allow the insanity defense, which strongly implies that the government itself regards epilepsy as a form of mental illness, in addition to the prejudiced public.

Above are publicly documented stories.  The private stories below are as personally traumatizing and horrific to believe, no less prosecute…

Like the lady who was almost convinced by doctors to pull the plug on her 16-year old daughter’s life support, because they asserted her young life would no longer have any “quality”.

The patient who came into the ER experiencing non-stop seizures who was considered too loud and unruly, so he was placed by nurses in a room down the hall, where the staff and waiting room patients would be spared the “scene.”

Nobody took the time to check on him until 30 minutes later by which time he needed to be put on a ventilator and subsequently died.

In Quebec, patients with epilepsy were written off as “crazy” and were imprisoned in a psychiatric hospital, where they were strapped to their beds all night, kept abusively in straitjackets, or left zombie-like from too many drugs.

“I have woken up in four point restraints.  Been injected with medication that caused me to have Grand Mal seizures.  I have also been on toxic doses of AEDs, which is part of the reason why I am now so physically ill.”

“I was put in the Harborview Psychiatry Intensive Care Unit for treatment of my epileptic seizures.  Epilepsy?  No. Insanity?  Yes. Or so they concluded in their wisdom.”

“I have been denied food, meds, sleep, needed medical care, etc.  Whatever happened to healing?  Prisons get more attention, but the problem is much worse in hospitals.”

“I made a good life for myself until I tried to get help from the medical establishment.  Once they started ‘taking care of me’ and not allowing me to take care of myself, that’s when everything went out of control and I got so seriously ill, I could no longer work.”

Laws are being broken, rights are being denied, people are suffering, being abused, ignored and dying.

Exactly what is the definition of a “doctor”? A “hospital”? Or “legal rights”?

And what does it take for someone with epilepsy to be treated with care like a real, bona fide patient?

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8 Comments »

  1. Makes u wonder! As an epileptic myself for more than 20years now, my doctor seems to just keep throwing meds at me hoping they will work.

    Liked by 1 person

    Comment by Russ Vigneri — March 29, 2024 @ 9:24 AM

  2. This is amazingly sad. Back in 1932 when my aunt began having petit mal seizures my grandparents became champions of teaching people and doctors about epilepsy. My grandmother was a foundational person for the American epilepsy foundation and went on to lead the epilepsy foundation of Southern California for many, many years. I developed epilepsy after encephalitis with many nonstop seizures. I am horrified and saddened by the way people are being treated today. Thank you Phyllis for the work you do.

    Liked by 1 person

    Comment by Marilyn Markham Petrich — March 29, 2024 @ 11:41 AM

  3. I may have shared this link before, but it goes to the topic – stigmatization is as alive as ever. Woe be to the civil servant who is caught up in a partial seizure that nobody understands. Ironically, I actively promote considering it to be a mental illness when symptoms dictate. How else will we stop the shrinks from shamelessly shoving us aside? https://tackingonthestyx.com/do-bloggers-stigmatize-epilepsy/

    Liked by 1 person

    Comment by Jeffrey Lee Hatcher — April 5, 2024 @ 1:33 PM

    • Without sounding trite, I think education is key.

      For everyone.

      EMTs, docs, nurses, police, firefighters, school personnel, parents, kids, etc. (You get my drift.)

      That’s a wonderful article you sent.

      It sort of reminds me of when I was in the hospital having a full blown tonic clonic and a nurse came in and said: “What’s the matter dear, are you feeling anxious?”

      Like

      Comment by Phylis Feiner Johnson — April 5, 2024 @ 2:26 PM

  4. Orieta Krauss, each seizure diminishes the gray matter around your brain — those neurons which are believed to enable individuals to control movement, memory, and emotions.

    While we can’t fight against science, we can try to help ourselves along with tips, https://epilepsytalk.com/?s=memory+tips tricks https://epilepsytalk.com/?s=alternative+medicine and even games. https://epilepsytalk.com/?s=games

    You just have to try your best. (I saw a friend rise from the ashes of brain surgery with disciplined suduko challenges!)

    I wish I could help you more.

    Like

    Comment by Phylis Feiner Johnson — April 16, 2024 @ 8:50 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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