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What are the unmet medical and social needs of people with epilepsy?
Wed, 12/19/2007 - 08:50Calling all users!
Recently the board members of Epilepsy Therapy Project shared their perspectives on the unmet medical needs for people with epilepsy. These experts and many others help scientists see where new research and development is needed.
I'd like to hear from community users about what you think are the unmet needs - both the medical and social needs. Add your views here and we'll write this up to share with everyone!
Thanks for your help!
Epi_help
Comments
Re: unmet medical and social needs of people with epilepsy?
Submitted by lorelama on Wed, 2008-04-30 - 08:02
Very well said Whitigrus! I was petrified and overprotective until my son turned twelve. My seizures started when I was 11 and when he turned twelve with no sign of E.......I am very lucky. But the education starting in the schools is soooo important, I don't know if all Epilepsy Foundation State Charters have this program but Minnesota's does
Seizure Smart Schools: http://www.efmn.org/index.asp?Type=B_BASIC&SEC={DCC19912-6297-43F6-B72C-252F31C00BD9}
School Nurse Training: http://www.efmn.org/index.asp?Type=B_BASIC&SEC={EB396174-BC00-403D-8DB7-8E6447C931E2}
Lorelama MN
Well behaved women rarely make history.
Very well said Whitigrus! I was petrified and overprotective until my son turned twelve. My seizures started when I was 11 and when he turned twelve with no sign of E.......I am very lucky. But the education starting in the schools is soooo important, I don't know if all Epilepsy Foundation State Charters have this program but Minnesota's does
Seizure Smart Schools: http://www.efmn.org/index.asp?Type=B_BASIC&SEC={DCC19912-6297-43F6-B72C-252F31C00BD9}
School Nurse Training: http://www.efmn.org/index.asp?Type=B_BASIC&SEC={EB396174-BC00-403D-8DB7-8E6447C931E2}
Lorelama MN
Well behaved women rarely make history.
Re:unmet medical and social needs of people with epilepsy?
Submitted by lorelama on Thu, 2008-04-10 - 11:55
unmet Social Issues:
Children are cruel and starting at a young age and pounding it in to there heads the diversity is GOOD!!!
I am 41 years old, seizures started at 11, I was in "middle school/junior high", while I was in the hospital, the school and it's administration took it apon themselves to tell all the children how "special" Laurie was. I was treated like a freak for the rest of JR high until I went to HS in a different district.
1.Making it known to all, that I/You are not an epileptic, you are a normal person that has epilepsy.
2. Making it clear to physicians that most patients with fear being treated as crazy, so when psychiatric care/trtment is brought up, we the patient automatically feel we are being labeled as crazy "which in this country is treated as a huge faux pa for anyone dealing with it".
Train physicians to better explain the connection between certain mental illness and epilepsy/medications. Teach the public what mental illness is: stop showing it as the devasting disease, show the people that deal with it daily, medicated, therapy etc.
I AM NOT A VICTIM!!! Quit treating me as such so the rest of the people around me enable that thought.
3. Medication
If I start out on a medication that is the trademark I should have a choice to stay on the trademark at no extra cost to me. Changing brand names, or to generics, causes a fine line of control or no control to be crossed.
Cost........what can I say...I think that if medications where better covered and readily covered, 2/3rds of all the medical issues would be solved and people would be healthier and less stress/anxious about purchasing meds
4. Last rant and I am done for the day. Statics without pictures do not help.
Example:Less than 1 percent of the US population has some relation to the current war in Iraq/Afghanistan.
Does that statistic really mean anything to you. Unless you were a military family member, no.
How's this:
If you were to go through your neighborhood or city and start knocking on doors to see if anyone was related to a soldier/sailor/airmen/marine currently fighting the Global War on terror, one out of every 200 doors you knocked on would say yes to your question.
I live in a city of 1300 - that means 7 families are currently affected personally by the war in iraq.
Does that statistic make a bigger impact for you? (I know this statistic like this because I helped the NMFA.org with a military quality of life study 2004, 2005,2006)
The every 27 seven seconds someone is diagnose with
One out of every XX has.......
Make it personal, make is a daily thought, make it so as they are looking at the people on the bus, train, plane, restaurant, playground......make it real.
Okay rant over, I hope I didn't offend anyone, people have been a little touchy on this site lately, so with this said I apologize in advance.
These are my thoughts, my 30 years of experience, my advice. Please take it as such.
Laurie
Normal epileptic
Military wife
Proud mom
Lorelama MN Well behaved women rarely make history.
unmet Social Issues:
Children are cruel and starting at a young age and pounding it in to there heads the diversity is GOOD!!!
I am 41 years old, seizures started at 11, I was in "middle school/junior high", while I was in the hospital, the school and it's administration took it apon themselves to tell all the children how "special" Laurie was. I was treated like a freak for the rest of JR high until I went to HS in a different district.
1.Making it known to all, that I/You are not an epileptic, you are a normal person that has epilepsy.
2. Making it clear to physicians that most patients with fear being treated as crazy, so when psychiatric care/trtment is brought up, we the patient automatically feel we are being labeled as crazy "which in this country is treated as a huge faux pa for anyone dealing with it".
Train physicians to better explain the connection between certain mental illness and epilepsy/medications. Teach the public what mental illness is: stop showing it as the devasting disease, show the people that deal with it daily, medicated, therapy etc.
I AM NOT A VICTIM!!! Quit treating me as such so the rest of the people around me enable that thought.
3. Medication
If I start out on a medication that is the trademark I should have a choice to stay on the trademark at no extra cost to me. Changing brand names, or to generics, causes a fine line of control or no control to be crossed.
Cost........what can I say...I think that if medications where better covered and readily covered, 2/3rds of all the medical issues would be solved and people would be healthier and less stress/anxious about purchasing meds
4. Last rant and I am done for the day. Statics without pictures do not help.
Example:Less than 1 percent of the US population has some relation to the current war in Iraq/Afghanistan.
Does that statistic really mean anything to you. Unless you were a military family member, no.
How's this:
If you were to go through your neighborhood or city and start knocking on doors to see if anyone was related to a soldier/sailor/airmen/marine currently fighting the Global War on terror, one out of every 200 doors you knocked on would say yes to your question.
I live in a city of 1300 - that means 7 families are currently affected personally by the war in iraq.
Does that statistic make a bigger impact for you? (I know this statistic like this because I helped the NMFA.org with a military quality of life study 2004, 2005,2006)
The every 27 seven seconds someone is diagnose with
One out of every XX has.......
Make it personal, make is a daily thought, make it so as they are looking at the people on the bus, train, plane, restaurant, playground......make it real.
Okay rant over, I hope I didn't offend anyone, people have been a little touchy on this site lately, so with this said I apologize in advance.
These are my thoughts, my 30 years of experience, my advice. Please take it as such.
Laurie
Normal epileptic
Military wife
Proud mom
Lorelama MN Well behaved women rarely make history.
Re: unmet medical and social needs of people with epilepsy?
Submitted by whitetigrus on Sun, 2008-04-27 - 19:42
One thing that nobody has mentioned yet that goes along with Public Awareness and Public Education is that we are not Freaks just because we have epilepsy. I was born with E. and I have a 17 yr. old son that I handed it down to. My son has only told a handful of people that he has epilepsy because he's embarressed of it and I can't say that I blame him. I'm embarrassed that I gave it to him and that he now has to learn how to live in the hell of having epilepsy for the rest of his life.
Schools do not have the proper education on what to do in the case of a seizure, that's where the education needs to start! Education in school; go figure! I had to tell his school what a seizure was like and what to do and what not to do in the event of a seizure with the help of this site. Schools should have posters showing what to do in the event of a seizure just as docotrs offices do! Then there are the jokes and the ridiculing of us blessed with E. People are ignorant because they don't take the time to learn about us, we're just labled as freaks because we convulse at any given time and place, which from past experiences can be harmful, embarrassing not to mention life altering! People don't look at you the same way when they find out that we have epilepsy.
Side effects from AED's should be an issue, I know it is with me! This part should go along with the school education also because of how the AED's can turn us into zombies, make us sleepy, not able to think or talk right therefore causing missed school.
I remember when I was a teen and would have seizures around my family while playing games and the seizure would end the game and everybody would go home making me feel worse because I ruined all of the fun! Now my son is in the same boat but I don't end the party because he has a seizure. I simply take him to his room where he can seize in bed and take his meds in private as he wants it! Growing up with E. was hell for me and now it's so hard for me to watch my son going through the same hell that I went through.
Then there's the relationships. I ruined so many relationships because of seizures its not even funny; looking back now I know that those people didn't need to be in my life but it's so hard on my son whom still has to accept the fact that he has E. He wants to get married someday but he doesn't want to have children with epilepsy and I can't say that I blame him. If I could have prevented him from getting epilepsy in any way I would have jumped trhough every hoop that I could have to prevent him from this hell!
Did I mention that living with epilepsy is hell! I've lost jobs and friends because of it and now I can't work because my memory is non-existant, I have a hard time reading, I talk funny "studdering and slurring words", and I can't drive because my seizures aren't controlled.
My mom is afraid to have me and my son around at the same time in case we both seize at the same time. My mom had to raise my son for me because I was afraid of dropping him or throwing him from a fricking seizure! When I started having seizures I know that I put my mom through hell. Don't get me wrong, my mom is the best woman that I know. She educated herself on epilepsy as good as she could back in the 80's when there was no internet just a handful of books and the quacks that I saw back then didn't tell her anything!
Wow, I didn't realize that I've writen so much so I'll stop for now!
Common sense is not so common!
One thing that nobody has mentioned yet that goes along with Public Awareness and Public Education is that we are not Freaks just because we have epilepsy. I was born with E. and I have a 17 yr. old son that I handed it down to. My son has only told a handful of people that he has epilepsy because he's embarressed of it and I can't say that I blame him. I'm embarrassed that I gave it to him and that he now has to learn how to live in the hell of having epilepsy for the rest of his life.
Schools do not have the proper education on what to do in the case of a seizure, that's where the education needs to start! Education in school; go figure! I had to tell his school what a seizure was like and what to do and what not to do in the event of a seizure with the help of this site. Schools should have posters showing what to do in the event of a seizure just as docotrs offices do! Then there are the jokes and the ridiculing of us blessed with E. People are ignorant because they don't take the time to learn about us, we're just labled as freaks because we convulse at any given time and place, which from past experiences can be harmful, embarrassing not to mention life altering! People don't look at you the same way when they find out that we have epilepsy.
Side effects from AED's should be an issue, I know it is with me! This part should go along with the school education also because of how the AED's can turn us into zombies, make us sleepy, not able to think or talk right therefore causing missed school.
I remember when I was a teen and would have seizures around my family while playing games and the seizure would end the game and everybody would go home making me feel worse because I ruined all of the fun! Now my son is in the same boat but I don't end the party because he has a seizure. I simply take him to his room where he can seize in bed and take his meds in private as he wants it! Growing up with E. was hell for me and now it's so hard for me to watch my son going through the same hell that I went through.
Then there's the relationships. I ruined so many relationships because of seizures its not even funny; looking back now I know that those people didn't need to be in my life but it's so hard on my son whom still has to accept the fact that he has E. He wants to get married someday but he doesn't want to have children with epilepsy and I can't say that I blame him. If I could have prevented him from getting epilepsy in any way I would have jumped trhough every hoop that I could have to prevent him from this hell!
Did I mention that living with epilepsy is hell! I've lost jobs and friends because of it and now I can't work because my memory is non-existant, I have a hard time reading, I talk funny "studdering and slurring words", and I can't drive because my seizures aren't controlled.
My mom is afraid to have me and my son around at the same time in case we both seize at the same time. My mom had to raise my son for me because I was afraid of dropping him or throwing him from a fricking seizure! When I started having seizures I know that I put my mom through hell. Don't get me wrong, my mom is the best woman that I know. She educated herself on epilepsy as good as she could back in the 80's when there was no internet just a handful of books and the quacks that I saw back then didn't tell her anything!
Wow, I didn't realize that I've writen so much so I'll stop for now!
Common sense is not so common!