Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
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 Sun, 2008-04-27 - 10:26
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.
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.
Re: What are the unmet medical and social needs
Submitted by ROCKNROLL on Fri, 2008-07-25 - 02:50
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.
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.
Re:unmet medical and social needs of people with epilepsy?
Submitted by lorelama on Sun, 2008-04-27 - 10:21
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
Dallas, 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.
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
Dallas, 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.