Epilepsy Talk

Where’s The Funding? Epilepsy As An Orphan | November 25, 2018

Here are the facts, unhappy though they may be…

Epilepsy is the 4th most common neurological problem – only migraine, stroke, and Alzheimer’s disease occurs more frequently.

Its prevalence is greater than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson’s disease combined.

As many people die from epilepsy as from breast cancer.

There are 200,000 new cases of epilepsy each year, and a total of more than 3 million Americans are affected by it.

Yet, public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis).

In total, and per patient, epilepsy research is significantly underfunded from three major sources: pharmaceutical companies, the government, and private foundations.

Pharmaceutical investment in epilepsy is less than in Alzheimer’s and Parkinson’s, and it’s expected to decline further over the next several years…

The government invests $140-160 million in epilepsy research, but per patient contributes less to epilepsy than it does to other major neurological disorders…

Finally, at less than $10 million, non-profit foundations contribute less than $4 per patient to epilepsy research. Parkinson’s, by contrast, receives $40-50 per patient from nonprofits.

Without research there can be no breakthroughs, not to mention a cure.

Yet per researcher, funding for epilepsy lags average funding for all diseases by nearly 50%.

Up to 50,000 Americans die each year from seizures and related causes, including drownings and other accidents.

And one in 10 people will suffer a seizure in their lifetimes.

By some estimates, the mortality rate for people with epilepsy is two to three times higher — and the risk of sudden death is 24 times greater — than that of the general population.

There is also a rise expected in the incidence of epilepsy among the veterans of the wars in Afghanistan and Iraq who have sustained traumatic head injuries.

Plus, between 1 and 3 percent of the population will develop some form of epilepsy before age 75.

Aside from the stark shortfall of funding for research and breakthrough treatments, epilepsy funding also affects the way we live (and die).

That includes risks and management. Education of professionals — doctors, health care providers, public personnel.

Without overall awareness, there’s slim chance for reliable resources, community service and above all, understanding and acceptance.

Just because you can’t see epilepsy it exists, lurking invisibly, causing irrefutable damage.

It’s time to recognize epilepsy and help treat it.

Take it out of the shadows of ignorance into the funding that it so sorely needs and deserves.

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  1. The Austin hospital in Melbourne ,Australia.have a large building where all they do is research into epilepsy and other similar diseases.

    Liked by 1 person

    Comment by Rodney minnis — November 25, 2018 @ 4:14 PM

  2. Why doesn’t the A A N / American Academy of Neurology have any accountability for getting more clinical trials & research studies funding done for epilepsy, instead of training all neurologists what drugs we take & how they can feel free to abuse our brains with those drugs ?

    Liked by 1 person

    Comment by jcdavis@hardynet.com — November 25, 2018 @ 4:51 PM

    • Accountability…to what? Drugs, as you say is the magic word.


      Comment by Phylis Feiner Johnson — November 25, 2018 @ 7:21 PM

    • I’m embarrassed to ask but I’m going to. Do any other epileptics get x-rated spam and find themselves signed up with their email addresses to such websites? Thank you and it wasn’t easy asking.

      Liked by 1 person

      Comment by Susan — November 27, 2018 @ 5:31 PM

      • Oh I don’t think you need to have epilepsy to receive x-rated spam.

        It’s probably a link you went to which coordinated with the spam site. Or sold your information to a spam site.

        I get about 18 spams a day. (Not ALL x-rated.)

        The problem is, if you try to “unsubscribe”, they know they’ve hit a “live person” and it just goes on and on and spreads like a bad rash.

        The only thing I can thing of is to remove your “cookies” and clean out your spam file. (I don’t know how to do it myself.)

        You might even try using a different browser.

        I have three browsers and usually only get the spam on my Gmail. Not my Outlook or Firefox.

        Interesting, eh?


        Comment by Phylis Feiner Johnson — November 27, 2018 @ 5:44 PM

      • Thank you so much!

        Liked by 1 person

        Comment by Susan — November 28, 2018 @ 12:02 PM

      • You’re more than welcome, Susan.


        Comment by Phylis Feiner Johnson — November 28, 2018 @ 12:05 PM

  3. It’s because people will always believe it’s a mental illness.

    Liked by 1 person

    Comment by Susan — November 25, 2018 @ 4:52 PM

  4. And you know, scientifically, it is a mental condition— but perhaps all these other organizations that collect for everything else but epilepsy- they’re the ones that have a worse mental problem – simply because they are incapable of realizing what we go through and they do not have an understanding of epilepsy- mainly because many seizures are not seen by everyone.

    It’s like I’ve always said- it would be great to invent a machine- yes, a machine. Let every person that does not have epilepsy experience a seizure- fasten a cord to each person, press a ‘magic’ button, and let them each experience having a seizure-( and make it long enough………). Oh yes, and also have them move to a secluded area and make their cars vanish instantly. Leave them like that for a year or two so they can experience the life of an epileptic.

    Liked by 1 person

    Comment by Karen — November 25, 2018 @ 6:42 PM

    • I love your machine idea. But a year or two? You’re one strict lady! 🙂

      As for the mental condition, I know it’s a matter of semantics, but I consider epilepsy to be a neurological condition.

      Maybe the mental illusion has helped get us into this mess.

      We’re not mentally ill, as others would have us think.

      Or others are conditioned to think.


      Comment by Phylis Feiner Johnson — November 25, 2018 @ 7:29 PM

  5. …and without being racist, African people with the disability are commonly judged by telling them that they are possessed by Satan. Where is the South African financial help to educate & help people with the disability, or help others to understand the condition?

    Liked by 1 person

    Comment by Dave — December 4, 2018 @ 11:24 AM

    • Dave, it’s probably where the American help is. Virtually nowhere. Although I admit, they may be more behind.


      Comment by Phylis Feiner Johnson — December 4, 2018 @ 4:34 PM

    • All people with epilepsy are judged as being possessed by the devil, not just blacks,
      but only by the ignorant.

      Liked by 1 person

      Comment by Susan — December 4, 2018 @ 5:00 PM

  6. My granddaughter has multiple seizures every day and it is getting worse. Meds don’t seem to help. Has anyone had an operation for it?

    Liked by 1 person

    Comment by Judith Dokmanovich — December 4, 2018 @ 11:25 AM

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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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