What are the unmet medical and social needs of people with epilepsy?

Re: What are the unmet medical and social needs

Submitted by wyboemail on Wed, 2008-04-23 - 16:54

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!

What are the unmet medical social needs of people with epilepsy?

Submitted by swiggs07 on Thu, 2008-04-24 - 01:20

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!!!