Epilepsy Talk

Where’s The Funding? Epilepsy As An Orphan | February 27, 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.

To subscribe to Epilepsytalk.com and get the latest articles by email, simply go to the bottom box of the right column and click on “Follow!”

Resources:

http://www.sheknows.com/health-and-wellness/articles/832857/epilepsy-facts-epilepsy-by-the-numbers

http://www.epilepsy.com/learn/epilepsy-statistics

https://www.cdc.gov/chronicdisease/resources/publications/aag/epilepsy.htm

http://www.newsweek.com/epilepsy-overlooked-and-underfunded-77467

http://www.nationalacademies.org/hmd/Reports/2012/Epilepsy-Across-the-Spectrum.aspx


30 Comments »

  1. The Epilepsy Foundation is the worst. We need a new nonprofit.

    Like

    Comment by Susan Vander Veer — February 27, 2018 @ 8:59 PM

  2. Its true and sad at same time !!!

    Like

    Comment by maryleeparker — February 27, 2018 @ 9:00 PM

  3. All the U.K Epilepsy Charities are Ltd Companies.That tells me profit takes precedence over research.

    Like

    Comment by Berenice — February 27, 2018 @ 9:15 PM

  4. How right you are Susan Vander Veer. So sad how they only listen to medical & BIG PHARMA propaganda but to hear the voices of the people, who some are VICTIMS from the Food & Drug industries, from vaccinations, to toxic baby foods, & other foods & drinks later in life, all to promise neurologists in all 50 states a job & job security for many decades later. The MSG’s & ASPARTAME’s found in drugs, foods & drinks are killing people daily. MSGS, ASPARTAMES, & NITRITES, are not just ”excitotoxins, but forms of carcinigens too that causes cancers anywhere in the body, including brain. So when MSG like what I had last week could had easily been worse if I ate 3 to 10X’s more of the food, odds are death would have happened from what happened with just 3 small pieces of granola cereal, which was a NON-GMO food, that I thought 3 small pieces would had been safe to eat for anyone. Was I wrong or what ? No food warning or alert on that package, but DEATH could had happened if more of it was eaten by me. All to say that EFA never has ever warned us about this SERIOUS fact, that MSG’s & ASPARTAME’s can cause seizures, plus I know they are found in many of not all AED’s of the generic names, but the BRAND name of ZONEGRAN, & more have MSG’s from vegetable oils, soy oils, & other sources that unless one learned it themselves as I did, nobody would ever know from neurologists or EFA even CURE could care less what causes seizures for any of us. As they say FOLLOW THE MONEY. The NAN is as bad because they protect all neurologists in their ways they do their treating of our conditions, SYMPTOMS, but never any root cause. How many foods of the ketogenic or MADD diet will soon be from NON-GMO foods in the future ? Better know that when they want to make changes to it, as the NON-GMO food world,, want to saturate all food store shelves in every state & every city & town.

    Like

    Comment by C D — February 27, 2018 @ 9:18 PM

  5. Absolutely! My epilepsy was caused by an allergy reaction to the whooping cough shot. Then, not until I’d had dull headaches for quite a while, I read that Aspartame could cause it………….yep. I stopped using any, and the headache was gone in a couple days. I wouldn’t be a bit surprised if it also made the epilepsy any worse than it already is. I was shopping in a new organic grocery store today, and I cannot believe how many things I ordinarily use aren’t found there………………..

    Like

    Comment by Karen — February 27, 2018 @ 10:41 PM

    • Karen, Aspartame is a killer. (Literally.)

      For 16 years, the FDA refused to approve aspartame.

      The FDA’s own toxicologist told Congress that: “Without a shadow of a doubt, aspartame can cause brain tumors and brain cancer and violated the Delaney Amendment, which forbids putting anything in food that is known to cause cancer.” — FDA Toxicologist, Dr. Adrian Gross

      It was finally accepted (for political reasons that are too scandalous to write about here) and here are the results:

      For starters, medical authorities estimate that aspartame has brought more complaints to the FDA than any other additive.

      Specifically, over the years, various reports have implicated aspartame in headaches, memory loss, seizures, vision loss, coma, and cancer.

      You might be interested in reading more here:

      The Scandal of Aspartame

      https://epilepsytalk.wordpress.com/?p=9945&preview=true

      Like

      Comment by Phylis Feiner Johnson — February 28, 2018 @ 5:03 AM

  6. Nearly cured by self diagnoses!. 25 years ago I was diagnosed with EP I don’t convulse but collapse. I consider Drs don’t tell you everything so after years of research I’ve diagnosed myself as having ‘conversion disorder’ I now have 2-3 catnaps a day which allows the brain to produce ‘delta waves’ = almost cured! Try it!

    Like

    Comment by Pete — February 28, 2018 @ 4:30 AM

    • Pete, you might want to read this article:

      Conversion Disorder and Epilepsy…

      https://epilepsytalk.com/2018/02/24/conversion-disorder-and-epilepsy/

      Like

      Comment by Phylis Feiner Johnson — February 28, 2018 @ 4:52 AM

      • The attached article in your reply makes interesting reading. I live in the uk and had an MRI scan which showed no abnormalities. Pete

        Like

        Comment by Pete — February 28, 2018 @ 5:52 AM

      • Further, the article states the sufferer is still awake when attacks happen, whilst this may be true where partial paralysis is concerned think not where seizures are concerned as most other articles never mention it! I’ve grown cynical of Dr’s.

        Like

        Comment by Pete — February 28, 2018 @ 6:06 AM

      • It’s easy to see why with all the double-talk.

        However, people who have simple partial seizures do not lose consciousness during the seizure.

        Some people, although fully aware of what’s going on, find they can’t speak or move until the seizure is over.

        They remain awake and aware throughout. Sometimes they can talk quite normally to other people during the seizure.

        Like

        Comment by Phylis Feiner Johnson — February 28, 2018 @ 6:11 AM

      • It’s easy to see why with all the double-talk.

        However, people who have simple partial seizures do not lose consciousness during the seizure.

        Some people, although fully aware of what’s going on, find they can’t speak or move until the seizure is over.

        They remain awake and aware throughout. Sometimes they can talk quite normally to other people during the seizure.

        Like

        Comment by Phylis Feiner Johnson — February 28, 2018 @ 6:11 AM

    • Another bit of information, if/when I feel a szs coming, deep breathing can sometimes avert it happening so I now take iron tablets which helps carry oxygen!

      Like

      Comment by Pete — February 28, 2018 @ 6:32 AM

      • Never heard of this. But if it works…

        Like

        Comment by Phylis Feiner Johnson — February 28, 2018 @ 6:34 AM

      • Another point worth noting, low iron can cause anxiety and restless foot syndrome!

        Like

        Comment by Pete — February 28, 2018 @ 8:01 AM

    • ‘No one’ knows all the answers, not even Dr’s. Not so long ago, so called experts once thought the world was flat, they were wrong!

      Like

      Comment by Pete — February 28, 2018 @ 6:47 AM

  7. Epilepsy is treated almost universally by drugs that were developed to treat an outdated model of the brain that was believed to be unable to repair itself. It’s time to wipe the slate and start again. I now treat my own complex generalised epilepsy with amino acids, it’s not the answer yet but it’s better than disabling my brain further with drugs that are addictive and prevent it’s ability to recover.

    Amino acids are the building blocks of proteins and encourage brain cell growth. I take vitamin D3 too. Vitamin D3 is available in sunlight and the right food contains amino acids. I take moringa and turmeric pills for their high doses of amino acids and anti oxidants. Moringa is a plant that grows all over india and the rest of the tropics.

    The effect of epilepsy medication on my seizures was that it made them worse and interfered with my brain’s ability to recover from them. I still experience terrible memory loss after a seizure but can take measures straight away to regain the lost memories by talking to people etc. It can still be very scary, my post ictal periods last up to three days, however the no longer involve heavy migrane headaches or complete inability to operate.

    Every seizure I have is now different, sometimes they appear to be improving, sometimes not. I am however treating myself as my own guinea pig. This is not an option I would recomend to anyone, my own options were limited but I hope one day my actions will be able to help everyone.

    Like

    Comment by chaplinslivingstatue — February 28, 2018 @ 5:01 AM

    • Bravo to you, for taking your own healing in hand. If nothing else, it’s a valiant start.

      Have you considered Acetyl-L-Carnitine?

      Acetyl-L-Carnitine energizes the brain and increases the levels of important neurotransmitter chemicals needed for memory, focus, and learning.

      Research shows that it also prevents and repairs the damage done to brain cells caused by stress and poor nutrition.

      Because of these three benefits, Acetyl-L-Carnitine dramatically improves mental concentration and mental energy.

      It is a natural component of our brain’s chemistry, but the body only makes it in small amounts. So supplementing with it is highly recommended for optimal brain function.

      Like

      Comment by Phylis Feiner Johnson — February 28, 2018 @ 5:12 AM

    • Hi, My EP started 25 years ago to cut a long story short I now take 2-3 naps a day, makes a world of difference, try it.

      Like

      Comment by Pete — March 1, 2018 @ 2:53 PM

  8. To some degree it really doesn’t matter if you are having “real” seizures” or “pseudo” seizures” or suffering from a conversion disorder. There is that grey area where the world still sees your seizures: your employer who may be concerned about your abilities, your colleagues who stare at you strangely, family and friends who are leery of a potential seizure. The DMV doesn’t do an EEG when you crash your car. The Medical insurance company just sees disability, and raises your rates. The system is so screwed, and there is no reason why mental health issues aren’t addressed immediately. It’s only when someone has finally gotten to a specialized Epilepsy Center that those issues are maybe addressed. The Epilepsy Foundation is an absolute joke, leaving people to look through websites for answers ( thank you Phylis, and others), than provide a stable, organized method of providing help to millions. It just makes me sick.

    Like

    Comment by skolly9 — February 28, 2018 @ 6:19 PM

  9. Since I’m on a roll Phylis, here’s something you might like to address, that I have encountered time and time again. Regarding the ongoing #MeTo movement, I’d like to bring up the issue of how the Neurologists, who are unfortunately generally male, treat their female patients. Feelings of being dismissed, disregarded, not believed, have been common. I could go on, but it would be interesting to hear from others. And don’t get me started on the Epilepsy Foundation.

    Like

    Comment by skolly9 — February 28, 2018 @ 6:48 PM

    • What about FEMALE neurologists? How many of those do you know?

      Like

      Comment by Phylis Feiner Johnson — February 28, 2018 @ 7:01 PM

      • Unfortunately, not enough Neurologists are female. I did go to one who unfortunately ended up specializing in children with epilepsy. She seemed more empathetic than male Neurologists.
        I should mention a book of poetry I just read called The Virginia State Colony for Epileptics and Feebleminded by Molly McCully Brown. Can get in local library. Should be eyeopening for people who know nothing about how those with epilepsy were treated in the past.

        Like

        Comment by skolly9 — March 1, 2018 @ 3:21 PM

      • Oh boy. I’ve written stories about castration, psych wards, guinea pig experiments under force. Bad, bad stuff. And that’s all in the past 50 years! 😦

        On person wrote:

        “We were locked up and used as a guinea pigs to try medications in the ‘testing stage.’ Believe me, they didn’t hesitate when it came to try untested medication.

        There were times I was pumped so full of meds I couldn’t walk straight, and it usually just made my seizures worse…

        If I had a seizure, they would give more med’s and lock me in the seclusion room.

        Sometimes if I had a seizure in the seclusion room, a nurse or attendant would come in and slap me around, some used a belt on me.

        I still have scares from that, even after 43 years.”

        Mike F.

        Like

        Comment by Phylis Feiner Johnson — March 1, 2018 @ 3:27 PM

  10. The frequency of epilepsy from what I remember is 1/26 people HAVE epilepsy. That’s almost 4% of the population. Epilepsy is still a closet medical condition. As prevalent as it is, people still fear it and shun us. I’m glad in the last number of years about 6 newer drugs have come out. Less toxic than older drugs I’ve been on.

    Like

    Comment by Travis — March 1, 2018 @ 10:57 AM

  11. […] via Where’s The Funding? Epilepsy As An Orphan — Epilepsy Talk […]

    Like

    Pingback by Where’s The Funding? Epilepsy As An Orphan — Epilepsy Talk – THE BIG BUCK HUNTER 2018 — April 5, 2018 @ 8:58 PM


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

    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.

    View Full Profile →

    Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 2,904 other followers

    Follow Epilepsy Talk on WordPress.com
%d bloggers like this: