Epilepsy Talk

Where’s The Funding? Epilepsy As An Orphan | August 19, 2020

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 150,000 new cases of epilepsy diagnosed each year, and a total of more than 2 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 and get the funding that it so sorely needs and deserves.

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


    Pingback by Where’s The Funding? Epilepsy As An Orphan — Epilepsy Talk – Epilepsy & Cerebral Palsy — August 19, 2020 @ 10:27 AM

  2. My husband had Viral Encephalitis 9 years ago in Bangkok hospital for a month. He’s had 1-4 seizures a year since then. He is again having seizures and abnormal brain waves for thE past month. I’d Like information About our options.

    Liked by 1 person

    Comment by Karen Kreitzberg — August 19, 2020 @ 11:08 AM

  3. Medications

    Treatment depends on the type of encephalitis you have, but may include:

    Anti-seizure medications (such as phenytoin) — to prevent seizures
    Immunosuppressants — medicines that stop the immune system from attacking healthy tissue
    Immunoglobulin therapy — a type of donated blood product that contains a number of specific antibodies, which help regulate the immune system’s abnormal function
    Steroid injections (such as dexamethasone) — to reduce brain swelling
    Antiviral medications, like acyclovir (Zovirax) and foscarnet (Foscavir) — to treat herpes encephalitis or other severe viral infections (however, no specific antiviral drugs are available to fight encephalitis)
    Plasmapharesis — removing the blood and discarding the parts that contain antibodies. After the blood has been treated, it is returned to your body
    Antibiotics — if the infection is caused by certain bacteria
    Sedatives — to treat irritability or restlessness
    Acetaminophen —for fever and headaches

    On another note, has your husband been tested and diagnosed?

    Beyond EEGs — Diagnostic Tools for Epilepsy

    Do you have a neurologist in the U.S?

    2020 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    It’s important to be diagnosed, so you know which region of the brain the seizures originate in and then be properly medicated.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — August 19, 2020 @ 11:22 AM

    • Never would have thought of “IMMUNOGLOBULIN THERAPY” or even “STEROID INJECTIONS”!! Makes me think that and prior epitologist I had it all wrong when he got SO UPSET because I wasn’t able to get 600mgs of “IBUPROFEN”!! I asked “why do I have to keep taking ibprophen?”. He said “because then it percents your brain from swelling up!!”. Which then cause my seizures. Why do our EPITOLOGISTS here in Canada not know these things? Or check if maybe it would be best to go that route and get us off of the FOSSIL DILANTIN AND TEGRETOL AND CLOBAZAM (which we can’t even get by BRAND NAME ANYMORE)?!

      Liked by 1 person

      Comment by Kathy S.B — August 19, 2020 @ 8:31 PM

    • It just dawned on me that the reason the epitologist was so adamant at me getting the ibprophen was because of the brain swelling. On that note it leaves me to wonder if we even have half of the things you stated I.e. steroid injections or antiviral medications is even utilized here in Alberta, Canada? Or even possibly say the gene therapy? Anything that gets a person off of Dilantin or it generic brand medication

      Liked by 1 person

      Comment by Kathy S.B — August 20, 2020 @ 8:47 PM

      • I don’t think these are things relevant to your condition.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — August 20, 2020 @ 10:51 PM

      • They maybe relevant to others?

        Liked by 1 person

        Comment by Kathy S.B — August 20, 2020 @ 10:53 PM

      • Yes, I was talking in the context of encephalitis.


        Comment by Phylis Feiner Johnson — August 20, 2020 @ 10:56 PM

      • I’ve never said this before but that was exactly what the doctor told my biological reproducer that may have cause my epilepsy but could never really figure out

        Liked by 1 person

        Comment by Kathy S.B — August 20, 2020 @ 11:20 PM

      • Sigh. Well maybe you finally have an answer. 😦

        Liked by 1 person

        Comment by Phylis Feiner Johnson — August 21, 2020 @ 8:57 AM

      • Maybe? I just wish they would figure this out and get me off some of the medications I’m on now or start taking me off them (or even taking the doses down on them if possible). Too bad we as patients have to be the ones who can figure this out ourselves and do their work for them or maybe it’s too sad some of them don’t listen to us period. Lol 😂 because they already know it all (as epitologists) who are actually a step higher then neurologists I just discovered the other week. The epitologist I seen made me feel as though he never had the time to even hear me or give me a chance to speak then told me it’s either KEPPRA or stay on Dilantin, tegretol, and clobazam and it should have been my pharmacist who phoned him to tell him I was allergic to generic medications. My response was “well maybe you should read the patients file properly before you see the patient not as your walking in the door like you did with me!! Then he said he’ll check back in with me in 6 months. However Canada is developing a medication with marijuana for epileptics as we speak and we’ll see what they say then? I told him “we already have doctors and clinics who do that now.” He hung up on me

        Liked by 1 person

        Comment by Kathy S.B — August 21, 2020 @ 10:02 AM

      • Yes, well everyone seems to be on the Keppra train, pushing it as if it was jelly beans. And that’s quite the mighty ultimatum.

        You said you were in line for a new (hopefully attentive) doctor. I’m afraid yours is a waiting game.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — August 21, 2020 @ 10:08 AM

      • Well I REALLY DO LIKE MY NEUROLOGIST NOW!!!!!!! And she’s more open to explaining things and possibly alternative medications as well. That KEPPRA train is very scary!!!!! And it’s not one I’m willing to jump on, but I sure wish we had more options in Canada that you do in the United States in terms of medications. I don’t think Canada has even heard of half of the medical treatments there are in the United States!! And I live right beside one of higher level epilepsy hospitals in Canada too!! Pretty sad when they have doctors like him representing them!! ( I don’t like playing the race card so I do MY BEST NEVER TO DO THAT!!).

        Liked by 1 person

        Comment by Kathy S.B — August 21, 2020 @ 10:23 AM

      • On the flip side that was something I constantly heard my biological reproducer say the doctors said it was caused from (as I was growing up). My come back to her was “are you sure it wasn’t from shaking me, abusing me physically or maybe drinking while you were pregnant with me? Afterall you did give me up for adoption when I was born and MOM (my grandma 🙏🏼🦅😇🙏🏼❤️) made you go back with her and get me once you came home?”. She never did answer me, but again she never knew I knew anything either. Lol so it turns out I was a pariah as well to my biological reproducer too!! 😉. I just figured I was already going to go down and I wasn’t going to go alone either!! Accountability takes a lot of courage but true sincerity takes the most courage and honesty in the universe!!!!!!! As my grandma’s and great grandparents baby I simply always had to be truthfully honest because they earned that respect and honesty and I never ever wanted to go back to my biological reproducer again in my life!!!!!!!

        Liked by 1 person

        Comment by Kathy S.B — August 21, 2020 @ 10:17 AM

  4. Thanks again, Phylis, for bringing this important issue to light. We are under served – I actually heard a public official say “un-deserved!” and prayed it was a Freudian slip – and under recognized. But we are never without the ability to advocate!

    Liked by 2 people

    Comment by Mary Ellen Gambon — August 19, 2020 @ 11:37 AM

  5. Many people at the NIH, CDC, FDA & AAN are not supporting any of us or doing their job for putting out what awareness information needs to be made public in ANY public place from a DMV to WALMART or any other popular place that we SEE THERE IS NO SEIZURE INFO that the public is so brain dead to because they just do not know anything about Epilepsy, even as they have heard that word ”epilepsy” before. A VITAMIN SHOPPE store worker was trying to help me find the herb LOBELIA, as I was telling her how it can help with the MANY uses you can use it for, as she asked me WHAT DO YOU USE IT FOR ? As I was begining to tell her GRAND MAL SEIZURES,, she then said WHAT’S THAT ? Then I said TONIC CLONIC & she never heard that term or name either. So then I said EPILEPSY,, and she heard that before. I then said what you do of anyone would have a GRAND MAL in the store, & she understood all of that , so she said. After all of 60 years I have lived and THIS is what the average person in the public knows or realizes about seizures & epilepsy, and their false & untrue beliefs they have, as they never have lived it by never having a seizure in their life to even know the difference from a GRAND MAL to a petit mal, as they now I see are getting called ”focal seizures”,, all to confuse us who have petit mals or petit mal feelings aka AURAS. So WHO are these people who are always changing seizure names ? It’s time they stay out of out lives & forever at that, especially when for decades we know what we have been living with, then your neurologists in 1 office visit will tell you,, YOU HAVE THESE SEIZURES NOW, WHICH IS MORE SERIOUS TO MANAGE. Oh really ? All because someone changes a few names of some seizures, we are now more at risk to survive 24 hours 365 days a year. That is the main reason why I believe God could just heal us all & put all of those people in an unemployment line. But I am the crazy one, they are not. I have the seizures, they don’t, Right.

    Liked by 1 person

    Comment by James D — August 19, 2020 @ 2:50 PM

    • I don’t think we’re at risk from the name changes. We’re at risk because of the uninformed and the misinformed. Not to mention the myths and prejudice.

      Everyone from first responders to hospital janitors should know what epilepsy is and how to deal with it. Doctors, nurses, ER staff, school teachers, students, etc.

      There should be a plan in place for if someone should have a seizure. Not just the random hope that someone will know what to do.

      Hell, half of our doctors don’t know what to do.

      Liked by 2 people

      Comment by Phylis Feiner Johnson — August 19, 2020 @ 3:29 PM

    • I have seizures too!! And I am VERY PROUD OF WHO I AM!! 😊😊😊😊😊😊😊😊😊

      Liked by 1 person

      Comment by Kathy S.B — August 19, 2020 @ 8:55 PM

  6. Many people from where you mentioned may not be supporting us BUT MANY ALSO DO? On the other hand I believe it does take a team (doctors, nurses, EPITOLOGISTS, lab technicians, and pharmacists as well as family and friends). People in a position or making positive change from all positions are always trying to help in one way or another. The world wasn’t created in a day. If the worker at the vitamin shoppe didn’t or doesn’t know there is always a way to help them learn as well in a positive way. AFTERALL they are there to help and always learn as well. They are human too. That is where you calmly teach them and make them your partner not give them a reason not to listen, learn and help all of us. You teach us and tell us. It’s all in the approach and wellness to be a team member. If you/we can live with epilepsy for decades we have had that many decades to also teach others as well with calm understanding, humility, thought and heart.

    Liked by 1 person

    Comment by Kathy S.B — August 19, 2020 @ 8:54 PM

    • I agree with the team approach, especially educating and learning. Ignorance is our enemy. And yes, everyone has something to learn. (Hopefully, more.)

      Liked by 1 person

      Comment by Phylis Feiner Johnson — August 20, 2020 @ 8:50 AM

  7. We’re house-hunting in the next state from us and I’m concerned that the views held by law enforcement here, epilepsy is a mental illness, will reach there affecting our house search. Paranoia or reality? If reality, isn’t that illegal? Thanks.

    Liked by 2 people

    Comment by Susan — August 20, 2020 @ 7:13 AM

  8. I think you might be feeling a little over sensitive. But, if an incident does happen, please reach out to your local epilepsy foundation and get their help. They’re your best friend. Get to know them.

    They also have educational seminars for public servants (police, fire department, first responders), doctors, ER personnel, nurses, teachers, schools, you name it.

    Reach out.

    And yes, it is against the law to discriminate against you in ANY way, including housing. That’s where your epilepsy foundation comes in again.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — August 20, 2020 @ 8:58 AM

    • Reach out to the Epilepsy Foundation? What progress have they made? What will they do for you? Answer: Nothing. They are completely useless. Have you seen the low level vague, idiotic junk they post on their site. USELESS information. Nothing that SOLVES anything or explains what’s going on.

      Liked by 1 person

      Comment by fedupRN — June 5, 2022 @ 1:27 PM

      • I agree that the National Foundation’s spokesperson is lame, at best.

        But each local entity operates differently. (For better or worse.)

        My group — the Epilepsy Foundation of Eastern PA — is impressive in its efforts to educate, advocate, sponsor support groups and bring in professional speakers.

        Otherwise, I would be just as disenchanted as you.


        Comment by Phylis Feiner Johnson — June 5, 2022 @ 1:51 PM

  9. Talking about orphan…
    Let’s orphans in Indonesia via us Sunnah Foundation (ussunnah.org)

    Liked by 1 person

    Comment by us Sunnah Foundation — August 26, 2020 @ 6:25 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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