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UPDATED: Tue, 04/08/2008 - 6:53pm
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epi_help
What are the unmet medical and social needs of people with epilepsy?
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Calling 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
By epi_help at Wed, 12/19/2007 - 5:50am | 347 views | 21 comments
Topic: Epilepsy.com Help
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Recent Comments on this Discussion
I DON'T KNOW IF THIS WAS ADDRESSED OR NOT. ONE OF THE BIGGEST UNMET MEDICAL NEEDS, IN MY OPINION, IS DOCTORS AND THEIR TRAINING. LAST TIME I WAS IN VEEG LAB, 4 DIFFERENT DOCS WERE TELLING ME 3 DIFFERENT THINGS. NO, NOT SZ, DEFINITELY SEIZING, ETC. IF THERE IS NOT CONTINUITY OF KNOWING WHAT EXACTLY A SEIZURE IS, HOW CAN WE EVER GET THE CORRECT CARE. OR, IF THERE IS NOT CONTINUITY OF KNOWING WHAT KIND OF SEIZURES WILL OR WILL NOT SHOW UP ON A VEEG, THE UNDERSTANDING THAT A VEEG DOES NOT HAVE THE CAPABLITY TO TELL WHAT IS GOING ON DEEP IN THE BRAIN, HOW DO WE GET CARE? I CAN TALK TO 7TO THE NTH, AND EACH HAS A DIFFERENT OPINION.
SECOND, FAMILY. I HAVE MADE A LOT OF NOISE THE WAY MY FAMILY TREATS ME. EDUCATION IS NECESSARY, BUT HOW DO YOU MAKE MANDATORY ED A POSSIBILITY? YOU CAN'T.
TV COMMERCIALS WOULD BRING AN AWARENESS. THE MAJORITY OF PEOPLE THINK THERE ARE ONLY TWO TYPES OF SEIZURES: PETIT MALS AND GRANDE MALS (TCS). TV......BRING AN AWARENESS OF WHAT EPILEPSY IS. I WOULD BE SURPRISED IF MEDICAL COMPANIES WOULD REJECT AN IDEA OF HAVING THEIR MEDICATIONS ADVERTISED, AND FOR WHAT KIND OF SEIZURES. IT MAY SOUND SILLY, BUT IT GETS PEOPLE THINKING AND WONDERING WHAT MORE IS THERE THAT THEY DON'T KNOW. CHILDREN'S SHOWS, DAYTIME SHOWS, PRIMETIME SHOWS SHOULD BE ASKED TO HELP IN THE CAUSE OF AWARENESS. WHILE IT MIGHT SEEM LIKE AN UNATAINABLE GOAL, THE RIGHT PERSON IN THE RIGHT PLACE CAN GET THIS AND MORE DONE. AND LASTLY, HOW ABOUT A PETITION SIGNED BY PEOPLE WITH EPILEPSY TO GET THE BALL ROLLING......ONLINE OR AT OUR LOCAL PHARMACIES, SUPPORT GROUPS, CHURCHES, ETC. THERE IS POWER IN NUMBERS! THAT'S IT!
I WISH YOU PEACE, LOVE, BLESSINGS, JOY.........JAN
I USE ALL CAPS FOR THE VISUALLY IMPAIRED.
One more thing,
this comment in the story
The video shows the 18-year-old ROTC cadet, who was on his way home to Mississippi, flailing on the ground from a seizure as a man digs into his pocket to steal his wallet.
I'm sorry, could the media please come up with better words!!!!! The kid sounds like an out of control freak.
Lorelama MN
Well behaved women rarely make history.
Here is a perfect example of the unmet medical and social needs of people with epilepsy and a shows an example to swiggs07's comment regarding CPR vs epilepsy awareness
http://www.wcbd.com/midatlantic/cbd/news.apx.-content-articles-CBD-2008-04-25-0001.html
Man having seizure is robbed Friday, Apr 25, 2008 - 03:37 AM Updated: 02:46 PM By NBC News Channel E-mailDallas, Texas police arrested Wednesday a man accused of mugging a teenage ROTC cadet who had collapsed in a seizure outside the downtown Greyhound bus station.
Both the crime and the arrest were captured on security cameras posted outside the Greyhound bus station.
The cameras have caught a lot of crimes on tape since they were installed in downtown and Jubilee Park a few years ago.
The surveillance video shows the victim standing outside minding his own business when a homeless man strikes up a conversation and the cadet digs deep in his pockets for some spare change to help the man out.
But when the cadet collapsed a few minutes later the man who rushed to the cadet's side was only interested in helping himself.
The video shows the 18-year-old ROTC cadet, who was on his way home to Mississippi, flailing on the ground from a seizure as a man digs into his pocket to steal his wallet.
"He sees an individual that can't fight back. Can't call for help. Can't flee," said Dallas Sr. Cpl. Kevin Janse. "This guy's down on the ground having a seizure and he knows he's got an easy target."
The victim was taken to Baylor Hospital were he was treated and released.
Officers monitoring the cameras spotted the suspect, who police identified as Frank White, 33, at the bus station again Wednesday morning.
White was arrested at the bus station and placed in the Dallas County Jail.
Janse said White, who may be homeless, hangs out in the downtown area and had previously been arrested by police.
"Any person in his right mind would have tried to help this guy and this suspect does the complete opposite," Janse said.
Lorelama MN
Well behaved women rarely make history.
I would like to see more research with marijuana for epilepsy. Maybe try marinol for the sezs? As of now per doctors say it's not approved for epilepsy Thanks...........x
I agree with everyone with our unmet and social needs! I miss integrating with others outside of the family. Just taking a nice walk due to fatigue from the meds or having an attcak outside without people thinking I am psycotic. Sleeping too much while others enjoy a nice day. The simple things people do/enjoy I have to work twice has hard.
I am new to this site and have found an immense amount of knowledge and kinship here. I wanted to add my thoughts on this thread...
1. Public knowledge of epilepsy: There is a stigma on people who have epilepsy, growing up with it since puberty i found that more and more people were ignorant of what epilepsy really is and to hide their ignorance of a subject they make fun of others who have to learn to live with a disease. I learned long ago that i control the disease, the disease does not control me. Having epilepsy does not make me any different than the next person walking down the street, it makes me empowered! I know i can accomplish anything life hands me and when i mention that i have epilepsy to others i get comments ranging from so how is that going to i am so sorry. I do not need pity, keep it for yourself, i function as well as the next "normal" person, sometimes i think even better than the next.
2. Public education on what to do in the event of a seizure: i do not feel safe in this society because most people have no idea what to do in the event of a seizure. They have no idea what should happen first, let alone how to talk to a person in the post-ictal state. It is humiliating at times for some people to have a seizure, some lose continence of bowel and bladder, others hurt themselves, and some like myself have a temporary amnesia of sorts. We teach CPR like there is no tomorrow, and granted while that can be life saving, helping someone through a seizure is lifesaving to them!!
3. Rising cost of medication: unfortunately there are some people who can not afford the medication even with insurance, i used to pay an 80 dollar co-pay for my medication on my old insurance. That is crazy, but then without insurance it is $190 per month. Then you add in all the other things you must do, from lab draws to testing, to doctor's visits, it is just too much at times.
4. Research: I am not a leper, i am a human being who just happens to have a disorder. I started out as a perfectly normal child, but something changed at puberty and now i am a perfectly normal adult with a disease, not much different from when i was little. Teach people about the need for research in this field, the brain is a wonderful and complex organ with so many pathways, well there is one pathway untraveled and that is the pathway to healing. Teach people how to heal each other, teach them to reach out and help someone in need, teach them something about epilepsy and its many faucets.
In closing: I am a single person who has accepted and embraced my different lifestyle that i must live now. I have accomplished a career of my choosing as a registered nurse when i was told i couldn't. I have birthed my son when i was told i couldn't and i will continue to defy whatever life throws at me when it tells me i can't, I will find a way...God bless everyone and never give up, find a way to make it happen!!!
Swiggs... Bravo and ditto... Everything you just said. I was diagnosed when I was 14. I am now 54. I have worked in the health care field for 27 years. I drive, live alone, own my own condo. I would like to add something regarding medication side-effects.
Medications: Catch 22... I am on med cocktail now that has given me back my independence. I was over-medicated for 20 years and in 2004 ended up in the hospital. I have memory loss. 2004-2005 blank, gone, nada. I almost lost my eyesight because of one of the meds. I have a compromised immune system. (If I get the flu I could end up in the hospital again.) It was seriously considered that there had been so much brain damage (from the meds) that I would never work or live alone again. By sheer grit and determination and a lot of help from family, friends, co-workers I managed to keep my job and excel. (I've been promoted. That means more to me than I can express.)
I don't recall any of my physicians telling me about the possible seriousness of side-effects. They were glossed over or added to a conversation as an 'oh by the way' comment. How can you make a decision with that kind of information? Physicians need to understand that side-effects are not just a chemical reaction. And people are not walking-talking petri dishes. And if you are over-medicated at the time of the discussion how about an advocate? Med side-effects change lives... for the better and for the worse. I have experienced both. I don't have an answer for the 'unmet need' of medication side-effects, but it must be addressed. PS: The physician that has me on this med cocktail is wonderful, caring, attentive. The other was not. Thanks for speaking Swiggs
Great remarks Swiggs07! Sounds like you and I have similar seizure history, anyway, welcome!
Lorelama MN
Well behaved women rarely make history.
1. PUBLIC AWARENESS IS THE BIGGEST THING. WHEN MY SON WAS DIAGNOSED NONE OF HIS TEACHERS KNEW ANYTHING ABOUT IT NOR DID WE. I KNEW PEOPLE MANY UEARS AGO THAT HAD IT BUT NOT WHAT A PERSON REALY NEEDS TO KNOW. PEOPLE GET PUSHED ASIDE WAY TOOFTEN EVEN NOW DAYS WHEN THEY HAVE EPILEPSY.
1 1/2. MEDICATION COST. COULD NOT PUT IT AT NUMBER 2 HAD TO DO THE 1 AND A HALF.
THANKS FOR BRINGING THIS TO THE FOREFRONT!
Great comments everyone! I'm going to put your remarks into an aticle for all to see. Keep it up!
Epi_help,
Resource Specialist
1. Horrible costs of medicine
2. Unemployment/Underemployment due to transportation problems when unable to drive. How can you work if you don't have access to public transportation?
3. Social services- trying to wade through the unbelievable paperwork for social services(Medicaid, Social Security disability). It's a joke! We just flat out gave up because they made it so confusing and frustrating. A 3 yr. wait to get a hearing for SS disability!!! That should be criminal!
4. Public awareness. We don't have a celebrity spokesperson who is our advocate to push for more research and studies.
The social services / economic factors are a huge deal for a lot of folks. Many lack insurance, or fall through the cracks of contemporary social services. ((Medicaid, Social Security disability) For us, it's a survival game. You get your meds where you can (on line) and access to routine blood tests and Doctor visits are completely out of reach. I can certainly identify with mamasaw's frustration.
Ivanpah
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.
Okay everyone.. I'm bumping this up again. I'd like users input on this. Then I'm going to write up YOUR opinions on this topic for the home page and the professional site of epilepsy.com. Just another way of helping us all communicate and know what's important to people with epilepsy.
You don't need to make it long,,, just put in your 2 cents worth!
Thanks!
Epi_help, Resource Specialist
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!
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.
Heather addressed it beautifully. I don't know how much can be done without insurance reform and lowering the costs of prescriptions. I pay $150 weekly just for for Topamax. I think thats robbery. And insurance won't touch my epilepsy. As for social issues, thats a big issue in the South especially in particularlly religious areas. For children, it's a medical condition, for adults it's a weakness with alot of superstition still tied to it. I don't feel there is enough public awareness anywhere in America. I don't see that changing without getting the same advertising and coverage other causes like breast cancer and heart disease get. We could learn from Great Britain actually and Epilepsy Action. They"ve been very successful in educating the public. Also, there has to be better doctor patient relations. So much of what happens in epilepsy depends on patient description, a doctor that doesn't listen can't make a correct diagnosis or provide quality care. Melissa D
Unmet needs definitely fall into social understanding and acceptance. In some ways, our general society is more able to accept epilepsy. Particularly when the subject is a young child.
My wish is that those speaking out, regarding E, wouldn't simply focus on those in young childhood. Those children are going to grow up someday...and it sure would be nice if that understanding went along with them! I also wish that the wide variety of types of seizures, as well as statisical seizure frequency (in layman's terms) could be discussed. You can't just show "best and worst case scenarios", as there are so many differences between all of us.
People need to understand that there are many different seizure types. Maybe the top 10 (?) could be described, as well as give advice to those present. Possible physical and emotional effects resultant of E should be described gently.
The medical needs have definitely become complicated in US, due to a large number of reasons. Surgery is very expensive, of course. Many medications are expensive as well. Many of us always seem to fall into the tough trap of finding the right medication/s and the correct dosage/s. That isn't very easy on the pocketbook. Epecially when finances are tight already. It is soon a tightrope! Then you find out that your epilepsy is medically intractable.
Some medical conditions recieve extra coverage through medical insurers, but epilepsy isn't one of them. As a result, money is a huge stress. You can't work the job you'd hoped for, as you don't have the memory or physical abilities-- you're not making the greatest money. At the same time, however, you are spending a heck of a lot more than the average Joe on medical fees and pharmacy bills-- but anything related to E is still seen as an "optional" treatment.
I think it is great that doctors are trying to find more ways to treat epilepsy more easily, and/or to more people. That is wonderful. But the monetary isssue certainly complicates matters. And that creates so many HUGE problems for so many people. I wish that something could be done to prevent these issues from occurring!
Heather
*refractory seizure surgery on left temporal lobe 03/06*
[...] The medical needs have definitely become complicated in US, due to a large number of reasons. Surgery is very expensive, of course. Many medications are expensive as well. Many of us always seem to fall into the tough trap of finding the right medication/s and the correct dosage/s. That isn't very easy on the pocketbook. Epecially when finances are tight already. It is soon a online drugstore! Then you find out that your epilepsy is medically intractable. [...]
All of my son's medical needs are met but his social needs are lacking. His seizures increase when he is in big crowds of people and also his medicines make him more likely to catch the other viruses or colds out there. The only time he gets to go out is when we go to the doctor. He doesn't play with other children and doesn't get the social interaction he needs because of his epilepsy.
Michelle
(Hayden's mom)
Care through Touch is an organization that provides massage to folks who would never be able to afford it. Certainly, there is nothing more helpful in reducing the soreness of muscles after a seizure than massage. It would also be an opportunity for understanding interaction.
Sometimes the simplest, most human of touches is all that is needed to restore us to wholeness.