"I am a single mom raising 2 daughters. I gross 1600 monthly, so I am told that I make too much money to be on Medicaid. I qualify for the spend down, but I cannot even afford that. I am supposed to take 750 mg of Depakote 3 times daily and 500 mg of Keppra 2 times daily. The medicine is very expensive and without health insurance I don't know where to turn. I feel overwhelmed and in the past year my seizures have increased drastically and don't really know why. I have been feeling very depressed and feel like things will never be better, especially since I am not getting the medical treatment that I need. I am supposed to have lab work done every 3 months, but I can't afford that. I am supposed to be seeing a neurologist, but I can't afford that, and I don't take my medicine the way that I am supposed to because I cannot afford it, so sometimes I skip doses to make my medicine last longer, so that I always have some on hand. I can feel my physical and mental health declining and I just don't know where to turn or what to do anymore. I also want my daughters to have a better understanding so that they won't be so afraid for me anymore."

Access to Affordable and Appropriate Medical Care

"I would like to KNOW that I will never be without my seizure medication!! The lack of funds makes this difficult. I suffer from chronic depression also, as do many epileptics, and not knowing if I will be able to obtain my meds only increases that depression."

· The average monthly out-of-pocket cost of epilepsy medications was $81; 27% of respondents paid more than $100 per month

· 14% of respondents have had to go without medication because of lack of money

· 7% of respondents had no health insurance

· 48% of respondents were not satisfied with their seizure control, yet only 20% were seeing an epilepsy specialist

Cognitive Affects of Epilepsy

"memory & processing is severely affected by epilepsy"

· 59% of respondents experienced memory problems in the past year

· 44% experienced "trouble thinking clearly or at normal speed"

· 42% experienced attention problems

· 40% experienced language problems

· 36% identified themselves as having a learning disability

Mental Health

"I believe it is important to help young people who have epilepsy deal with it on an emotional and mental level as much as a physical level. I have found that one the biggest changes I have experienced is a mental change more than physical. Counseling is important."

· 39% of respondents experienced depression in the past year; 37% experienced low self esteem

· Respondents reported that their mental health was "not good" on an average of 9 days in the past month

Epilepsy Self-Management

“Help me with finding the cause of my son's seizures and how to control them.”

· 54% of respondents miss at least one dose of antiepileptic medication per year; 21% miss at least one dose per month

· Only 44% of respondents used healthy sleep habits to help control their seizures; only 26% used stress management techniques to help control their seizures (healthy sleep habits and stress management are two lifestyle changes likely to improve seizure control)

Social Support

“Just talking to other older persons with epilepsy would be of great help.”

“I also think a 4-7 day FAMILY camp for kids with epilepsy and their families would be a wonderful experience. This would allow the kids to experience camp, but allow parents in similar situations to meet and bond as well as provide siblings with opportunities to meet other siblings and discuss issues.”

Public and Professional Awareness of Epilepsy

“As an educator and one who has seizures, the lack of info and strategies among my colleagues is appalling. A statewide push for in-services is needed desperately.”

Employment

“I am a nurse who is not able to find employment ..is this due to my medical condition?”

Transportation

“It would be so helpful to have some transportation. It is impossible to find transportation where we live. This includes public. This is the BIGGEST barrier for our family.”