Where’s the funding? Epilepsy as an orphan.

Where’s the funding? Epilepsy as an orphan. | August 2, 2022

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 3.4 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.

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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Resources:

https://www.ncbi.nlm.nih.gov/books/NBK100605/

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

https://www.who.int/news-room/fact-sheets/detail/epilepsy

https://www.healthline.com/health/epilepsy/facts-statistics-infographic#8

https://www.cdc.gov/epilepsy/about/fast-facts.htm

Posted in Epilepsy, Research
Tags: $35 a patient funding, autism spectrum disorder, breast cancer, cerebral palsy, Epilepsy, mortality, multiple sclerosis, orphan, Parkinson’s Disease

5 Comments »

Reblogged this on Disablities & Mental Health Issues.

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Comment by Kenneth — August 2, 2022 @ 9:34 AM

Reply
People in this world of EPILEPSY & SEIZURES that we live with has to demand NEW LEADERS to get something different for us as advocates, who are nothing but political puppets to their politicians. EFA/ Epilepsy Foundation of America. CURE.org & others like them who never do anything in OUR interests unless we are 1 of theirs where they guide us as 1 of their own puppets that they brainwash us as their own POPULAR doctors do at the same time when we allow them to elevate us, as long as we are only part of THEIR ANSWERS FOR US, & not getting the answer that WE WANT FOR US. That is how it has been now for my past 60 years + since living with epilepsy from 5 months old, which will be 62 years this THANKSGIVING DAY. But when FINALLY a drug is maybe working as I can feel & believe it is for now with XCOPRI,, there needs to be now some asked questions that relates MORE from the past, then just to monitor now & the future days looking ahead, and all gets forgotten about to where THIS DRUG just might be a WONDER DRUG as you wonder how long it may work & then at no notice it just STOPS WORKING. I am all but shocked that I have had NO EEG in these almost 9 months to see if XCOPRI results in a person maybe having a 1st ever normal EEG after an age of over 21 to 65 years old as teens & younger can not have this drug for whatever reasons,,, SO THEY SAY. I say if this drug was around when I was only 5 years old I would had wanted to try it knowing what I was going through then at 5 years old. GABA neurotransmitter is always being effected from any of these other drugs as is GLUTAMATE, SEROTONIN & DOPAMINE from Phenobarbital, Dilantin, Keppra, Lamictal & all the rest which really never did 1 thing for me as did MEBERAL, TEGRETOL, & other drugs that I took. Of course FDA limits what doctors will help people at different ages & so on, so I was told at age 61. that I need to THINK ABOUT MY OWN INDEPENDENCE. Uhhhh Why didn’t they say that to me when I was THINKING OF MY LIFE & INDEPENDENCE around age 16 to 25 ? I still had the worthless drugs then & the seizures then as well, but i was only their patient for 16 to 25 years, and after 61 years I guess they get tired of the same face so it was to be a VNS, RNS or EXCOPRI, so I picked XCOPRI with no regrets yet. I will say the 50 MG tablets are the safest to take with LESS side effects to deal with from it. NEVER take those other XCOPRI tablets.

LikeLiked by 1 person

Comment by James D — August 3, 2022 @ 6:26 PM

Reply
Let me make this as clear as can be, When your 1st seizure is under 1 year old, your life suddenly is in everyone else’s hands from your parents to every doctor you see until you get to 18 years old. THEN YOU ARE ON YOUR OWN after everyone else had made your life HELL for 18 years, and your days of ever having normal brain growth & development never happens. NOW YOU are hoping to make a difference on your own before age 21, doesn’t happen though as you think age 25, 30, to 40 something has to change but it doesn’t. Then you hope a brain surgery after age 40 works, & it does not, so a VNS, RNS, & other gadget schemes are to work until you ask your neurologist after 61 years is there another drug that you can try, that you never had before, and you try it,, XCOPRI, and things start looking better BUT you are never promised a seizure free life no matter what. You are still hesitate about others who can react in a 911 reaction when they still can see you in a GRAND MAL seizure, so you’re a home body instead of being any part of a public crowd, and HOW DID THIS ALL START ? CONTROL & POWER BY OTHERS, that they call LOVE & CARING FOR YOU, while knowing they are thanking God that they do not live the life that YOU OR I live. So what GOOD has any funding ever did or has done for a person over 62 years old who has no future & has had no life ? IF’s & IF IDA’s, never cures anything. Just makes life more depressing.

LikeLiked by 1 person

Comment by James D — August 4, 2022 @ 11:35 AM

Reply
Since I got a VNS in 1998 when my Dr. discovered why the epilepsy was intractable…..I still take meds. and I have rare seizures so I’ve almost forgotten the chaos that exists, I can understand James D’s comment where ‘your life is in others’s hands’ and I lacked memory for the first 30 years of my life. Other people must be made aware of this/our chaos. I quickly went to the Epilepsy Foundation to see of various reasons why this happens: idopathic; brain infection (I had one); genetics and so on. I discovered Congress is working on funding for research (they passed one last year). Perhaps you can submit your article Phylis to the New Yorker or other magazines like Good Housekeeping (or something that parents read) so they see what youngsters face… that mention that the CDC and WHO are also involved with this disorder, then other’s might be aware of this difficulty. I’ve heard about migraines but epilepsy has not been mentioned….perhaps too many are paranoid about something they don’t understand. Well it’s being researched though we need help as you say.
Well I have read Dr.’s have been considering VNS’s to younger children. Then their lives will be livlier and they’ll remember going to a park.

LikeLiked by 1 person

Comment by leonchavarria — August 11, 2022 @ 2:59 PM

Reply
Wonderful statement Leon. There is a consensus that epilepsy and migraines share a similar disorder. And I think people are selfish in their paranoia, as well as ill informed.

Epilepsy & Migraines — Kissing Cousins https://epilepsytalk.com/2022/05/07/epilepsy-migraines-kissing-cousins-2/

Is it a headache, an aura, a migraine, a seizure, or perhaps ALL four! https://epilepsytalk.com/2021/04/12/is-it-a-headache-an-aura-a-migraine-a-seizure-or-perhaps-all-four/

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Comment by Phylis Feiner Johnson — August 11, 2022 @ 3:27 PM

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Reblogged this on Disablities & Mental Health Issues.

LikeLike

Comment by Kenneth — August 2, 2022 @ 9:34 AM

People in this world of EPILEPSY & SEIZURES that we live with has to demand NEW LEADERS to get something different for us as advocates, who are nothing but political puppets to their politicians. EFA/ Epilepsy Foundation of America. CURE.org & others like them who never do anything in OUR interests unless we are 1 of theirs where they guide us as 1 of their own puppets that they brainwash us as their own POPULAR doctors do at the same time when we allow them to elevate us, as long as we are only part of THEIR ANSWERS FOR US, & not getting the answer that WE WANT FOR US. That is how it has been now for my past 60 years + since living with epilepsy from 5 months old, which will be 62 years this THANKSGIVING DAY. But when FINALLY a drug is maybe working as I can feel & believe it is for now with XCOPRI,, there needs to be now some asked questions that relates MORE from the past, then just to monitor now & the future days looking ahead, and all gets forgotten about to where THIS DRUG just might be a WONDER DRUG as you wonder how long it may work & then at no notice it just STOPS WORKING. I am all but shocked that I have had NO EEG in these almost 9 months to see if XCOPRI results in a person maybe having a 1st ever normal EEG after an age of over 21 to 65 years old as teens & younger can not have this drug for whatever reasons,,, SO THEY SAY. I say if this drug was around when I was only 5 years old I would had wanted to try it knowing what I was going through then at 5 years old. GABA neurotransmitter is always being effected from any of these other drugs as is GLUTAMATE, SEROTONIN & DOPAMINE from Phenobarbital, Dilantin, Keppra, Lamictal & all the rest which really never did 1 thing for me as did MEBERAL, TEGRETOL, & other drugs that I took. Of course FDA limits what doctors will help people at different ages & so on, so I was told at age 61. that I need to THINK ABOUT MY OWN INDEPENDENCE. Uhhhh Why didn’t they say that to me when I was THINKING OF MY LIFE & INDEPENDENCE around age 16 to 25 ? I still had the worthless drugs then & the seizures then as well, but i was only their patient for 16 to 25 years, and after 61 years I guess they get tired of the same face so it was to be a VNS, RNS or EXCOPRI, so I picked XCOPRI with no regrets yet. I will say the 50 MG tablets are the safest to take with LESS side effects to deal with from it. NEVER take those other XCOPRI tablets.

LikeLiked by 1 person

Comment by James D — August 3, 2022 @ 6:26 PM

Let me make this as clear as can be, When your 1st seizure is under 1 year old, your life suddenly is in everyone else’s hands from your parents to every doctor you see until you get to 18 years old. THEN YOU ARE ON YOUR OWN after everyone else had made your life HELL for 18 years, and your days of ever having normal brain growth & development never happens. NOW YOU are hoping to make a difference on your own before age 21, doesn’t happen though as you think age 25, 30, to 40 something has to change but it doesn’t. Then you hope a brain surgery after age 40 works, & it does not, so a VNS, RNS, & other gadget schemes are to work until you ask your neurologist after 61 years is there another drug that you can try, that you never had before, and you try it,, XCOPRI, and things start looking better BUT you are never promised a seizure free life no matter what. You are still hesitate about others who can react in a 911 reaction when they still can see you in a GRAND MAL seizure, so you’re a home body instead of being any part of a public crowd, and HOW DID THIS ALL START ? CONTROL & POWER BY OTHERS, that they call LOVE & CARING FOR YOU, while knowing they are thanking God that they do not live the life that YOU OR I live. So what GOOD has any funding ever did or has done for a person over 62 years old who has no future & has had no life ? IF’s & IF IDA’s, never cures anything. Just makes life more depressing.

Comment by James D — August 4, 2022 @ 11:35 AM

Since I got a VNS in 1998 when my Dr. discovered why the epilepsy was intractable…..I still take meds. and I have rare seizures so I’ve almost forgotten the chaos that exists, I can understand James D’s comment where ‘your life is in others’s hands’ and I lacked memory for the first 30 years of my life. Other people must be made aware of this/our chaos. I quickly went to the Epilepsy Foundation to see of various reasons why this happens: idopathic; brain infection (I had one); genetics and so on. I discovered Congress is working on funding for research (they passed one last year). Perhaps you can submit your article Phylis to the New Yorker or other magazines like Good Housekeeping (or something that parents read) so they see what youngsters face… that mention that the CDC and WHO are also involved with this disorder, then other’s might be aware of this difficulty. I’ve heard about migraines but epilepsy has not been mentioned….perhaps too many are paranoid about something they don’t understand. Well it’s being researched though we need help as you say.
Well I have read Dr.’s have been considering VNS’s to younger children. Then their lives will be livlier and they’ll remember going to a park.

Comment by leonchavarria — August 11, 2022 @ 2:59 PM

Wonderful statement Leon. There is a consensus that epilepsy and migraines share a similar disorder. And I think people are selfish in their paranoia, as well as ill informed.

Epilepsy & Migraines — Kissing Cousins https://epilepsytalk.com/2022/05/07/epilepsy-migraines-kissing-cousins-2/

Is it a headache, an aura, a migraine, a seizure, or perhaps ALL four! https://epilepsytalk.com/2021/04/12/is-it-a-headache-an-aura-a-migraine-a-seizure-or-perhaps-all-four/

Comment by Phylis Feiner Johnson — August 11, 2022 @ 3:27 PM

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