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 Social Needs
Submitted by Sincereply on Sun, 2008-04-27 - 13:33
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.
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.
unmet medical and social needs
Submitted by mommy2kyra on Fri, 2008-02-15 - 02:23
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*
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*
Unmet Social Needs
Submitted by mommy2threenow on Wed, 2007-12-19 - 10:44
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)
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)