Why society don't take Epilepsy serious?

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I am 46 years old I have been on the same job for about 20 years. I have been having seizures for the last five years. I have the kind where I actually pass completely out. I ignored it, I just dust myself off and kept going because I knew as long as I take my medication I would not have one. My doctor finally told me you have epilepsy. What is that I wondered, I went to the computer and it informed on every thing I needed to know, but do you know the thing that bother me the most is that there is little awareness, it's not like cancer , heart attack, strokes. My job offer critical illness coverage which I do have, and this is a state job. The State Of Georgia offer nothing for epilepsy, but it cover blindness, old timer, stroke , heart attack, cancer but not epilepsy. Our brain and heart are our main source of our body, but epilepsy does not get any kind recognition. I did not even think twice about it until it happen to me, but I can say it open my eyes. So if you are out there and you have the power to make a different join the fight because the battle is real.

Comments

I hear you Jay. Epilepsy has

Submitted by Jazz101 on Tue, 2019-07-16 - 18:32

I hear you Jay. Epilepsy has a history of "Don't want to talk about it" and "Well, we have to be very guarded when it comes to individuals with Epilepsy." There was a test that Mayo Clinic, who is rated number one in neurology and neurosurgery, conducted many years a ago and the outcome was written about in the New York Times. The irony is that the finding, to me, was not news. The test was about being too guarded when it comes to individuals with Epilepsy. I think the headline read something like; "Epilepsy. Fear Not or At Least Fear Less." In it they cited how being too guarded of individuals can hinder us is so many ways, which can then result in other bigger setbacks. For someone like me who has had it since I was 4, I could have told them that. That said, the upside is that neurology today has advanced significantly. Today the Foundation is playing a vital role in many different areas regarding laws and the likes relative to individuals with Epilepsy. My surgeon was/is way ahead in his knowledge of the brain relative to Epilepsy and other neurological conditions. So, as you can see, Epilepsy comes down to being very selective with hospitals. You want to make sure your hospital has a very good idea about this neurological condition. A great source for that is US News and World Report. Here is the link to the hospital ratings in neurology and neurosurgery here in the US.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIt has been cited in the past by many in neurology about how underfunded Epilepsy has been relative to other medical conditions. I am sure by now there has been some improvement there. It will probably differ from state to state. Epilepsy is about the more you know--things like "it doesn't come in one form." That information can be found at this site. I realized that when you have Epilepsy you have to be your own advocate. That means feeling free to change doctors is you find the one you are with doesn't know much about the condition, or maybe knows a lot about the condition but he or she may be at a hospital that doesn't have the back up. Have a lot of conversations with your neurologist. I find they are more open to sifting through many different options when you ask a lot of questions. Your neurologist should be seen from two angles; a personal angle and a professional angle. As a result, if you have a neurologist who isn't open to questions, it's time to find another. I find that when they see that you view Epilepsy from a medical perspective, they are more willing to work with you; more willing to be flexible. Dealing with Epilepsy takes discipline on both sides--ours and that of the neurologist. History changes with time. But it takes everybody making a difference. When you have Epilepsy, I learnt that you can't expect everyone to understand it right away. But that is where we come in. We can cite facts when someone hands you their unfounded "what I heard about it" line. Feel free to correct others with advocacy and civility. After all, when they see that in you, well, that also edits how they approach you. It's never late to late to be your own advocate. After all, today we have a lot of backup in neurology and organizations like the Epilepsy Foundation. The foundation meets with Congress to advocate on our behalf. Many of us might not know that. But it is true. Best Regards

I hear you Jay. Epilepsy has a history of "Don't want to talk about it" and "Well, we have to be very guarded when it comes to individuals with Epilepsy." There was a test that Mayo Clinic, who is rated number one in neurology and neurosurgery, conducted many years a ago and the outcome was written about in the New York Times. The irony is that the finding, to me, was not news. The test was about being too guarded when it comes to individuals with Epilepsy. I think the headline read something like; "Epilepsy. Fear Not or At Least Fear Less." In it they cited how being too guarded of individuals can hinder us is so many ways, which can then result in other bigger setbacks. For someone like me who has had it since I was 4, I could have told them that. That said, the upside is that neurology today has advanced significantly. Today the Foundation is playing a vital role in many different areas regarding laws and the likes relative to individuals with Epilepsy. My surgeon was/is way ahead in his knowledge of the brain relative to Epilepsy and other neurological conditions. So, as you can see, Epilepsy comes down to being very selective with hospitals. You want to make sure your hospital has a very good idea about this neurological condition. A great source for that is US News and World Report. Here is the link to the hospital ratings in neurology and neurosurgery here in the US.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIt has been cited in the past by many in neurology about how underfunded Epilepsy has been relative to other medical conditions. I am sure by now there has been some improvement there. It will probably differ from state to state. Epilepsy is about the more you know--things like "it doesn't come in one form." That information can be found at this site. I realized that when you have Epilepsy you have to be your own advocate. That means feeling free to change doctors is you find the one you are with doesn't know much about the condition, or maybe knows a lot about the condition but he or she may be at a hospital that doesn't have the back up. Have a lot of conversations with your neurologist. I find they are more open to sifting through many different options when you ask a lot of questions. Your neurologist should be seen from two angles; a personal angle and a professional angle. As a result, if you have a neurologist who isn't open to questions, it's time to find another. I find that when they see that you view Epilepsy from a medical perspective, they are more willing to work with you; more willing to be flexible. Dealing with Epilepsy takes discipline on both sides--ours and that of the neurologist. History changes with time. But it takes everybody making a difference. When you have Epilepsy, I learnt that you can't expect everyone to understand it right away. But that is where we come in. We can cite facts when someone hands you their unfounded "what I heard about it" line. Feel free to correct others with advocacy and civility. After all, when they see that in you, well, that also edits how they approach you. It's never late to late to be your own advocate. After all, today we have a lot of backup in neurology and  organizations like the Epilepsy Foundation. The foundation meets with Congress to advocate on our behalf. Many of us might not know that. But it is true. Best Regards

I hear you Jay. Epilepsy has a history of "Don't want to talk about it" and "Well, we have to be very guarded when it comes to individuals with Epilepsy." There was a test that Mayo Clinic, who is rated number one in neurology and neurosurgery, conducted many years a ago and the outcome was written about in the New York Times. The irony is that the finding, to me, was not news. The test was about being too guarded when it comes to individuals with Epilepsy. I think the headline read something like; "Epilepsy. Fear Not or At Least Fear Less." In it they cited how being too guarded of individuals can hinder us is so many ways, which can then result in other bigger setbacks. For someone like me who has had it since I was 4, I could have told them that. That said, the upside is that neurology today has advanced significantly. Today the Foundation is playing a vital role in many different areas regarding laws and the likes relative to individuals with Epilepsy. My surgeon was/is way ahead in his knowledge of the brain relative to Epilepsy and other neurological conditions. So, as you can see, Epilepsy comes down to being very selective with hospitals. You want to make sure your hospital has a very good idea about this neurological condition. A great source for that is US News and World Report. Here is the link to the hospital ratings in neurology and neurosurgery here in the US.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIt has been cited in the past by many in neurology about how underfunded Epilepsy has been relative to other medical conditions. I am sure by now there has been some improvement there. It will probably differ from state to state. Epilepsy is about the more you know--things like "it doesn't come in one form." That information can be found at this site. I realized that when you have Epilepsy you have to be your own advocate. That means feeling free to change doctors is you find the one you are with doesn't know much about the condition, or maybe knows a lot about the condition but he or she may be at a hospital that doesn't have the back up. Have a lot of conversations with your neurologist. I find they are more open to sifting through many different options when you ask a lot of questions. Your neurologist should be seen from two angles; a personal angle and a professional angle. As a result, if you have a neurologist who isn't open to questions, it's time to find another. I find that when they see that you view Epilepsy from a medical perspective, they are more willing to work with you; more willing to be flexible. Dealing with Epilepsy takes discipline on both sides--ours and that of the neurologist. History changes with time. But it takes everybody making a difference. When you have Epilepsy, I learnt that you can't expect everyone to understand it right away. But that is where we come in. We can cite facts when someone hands you their unfounded "what I heard about it" line. Feel free to correct others with advocacy and civility. After all, when they see that in you, well, that also edits how they approach you. It's never late to late to be your own advocate. After all, today we have a lot of backup in neurology and organizations like the Epilepsy Foundation. The foundation meets with Congress to advocate on our behalf. Many of us might not know that. But it is true. Best Regards

Why society don't take Epilepsy serious?

Comments

I hear you Jay. Epilepsy has

Submitted by Jazz101 on Tue, 2019-07-16 - 18:32

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