CNN Reports Epilepsy Data

CNN) -- An estimated one percent of adults have active epilepsy, and many of them are getting insufficient treatment, according to a 19-state survey released Thursday.

A follow-up survey is planned to determine why so many people with seizure disorders said they had not seen a specialist in the past year, Kobau said.

"This is a highly specialized field," said Eric Hargis, the president and CEO of the Epilepsy Foundation, which collaborated with the authors of the study. "It's not possible to get state-of-the-art care" for the disorder from primary care doctors.

One in six (16.1 percent) adults with active epilepsy with recent seizures said they were not taking their medication and two-thirds (65.1 percent) said they had had more than one seizure during the prior month.

More than a fifth (20.4 percent) said cost was a barrier to seeking care from their doctor.

Access to high-quality care is key to quality of life, Kobau said. People with recurrent seizures face substantial impairments in their daily activities; many are not allowed to drive and, as a result, depend on public transportation. In some areas, particularly rural ones, that can present a barrier to full participation in life, she said.

That's not all. In addition to carrying stigma, people with epilepsy were more likely to live in households with the lowest annual incomes and to report being unemployed and unable to work.

According to the 2005 findings, 1.65 percent of the population said they had been told by a doctor that they had epilepsy or a seizure disorder, the report said. Half of that group (0.84 percent) said they had active epilepsy -- defined as having had one or more seizures during the prior three months or currently taking medication.

If the findings translate to the general population, that means a stadium filled with 60,000 people would contain 480 people with active epilepsy, Kobau noted, adding, "Epilepsy is not rare."

But that view was disputed by Dr. James King, a family physician in Selmer, Tennessee, and president of the American Association of Family Physicians.

"There are patients that can be managed fairly simply with seizure disorder," he said in a telephone interview. "In my own personal practice, I'd say that I can manage at least half, if not more, of the patients that have seizure disorder."

Many of the others are able to get by with just a one-time visit to a neurologist, said King, whose practice is 50 miles from the nearest neurologist, and 100 miles from the nearest neurologist who accepts Medicaid, the government program for the poor.

"There's only a handful of patients that are managed in my area by the neurologist." He said financial barriers -- from insurance to the cost of anti-seizure medication -- are a bigger problem.

"If you can't afford to buy it -- which is what I run into with a lot of the seizure medicine -- it doesn't really matter" if patients see a neurologist or a family physician, he said.

Many patients, forced to choose between paying their light bill or taking their anti-seizure medication, choose the former, King said.

Epilepsy is a condition in which the normal activity of the brain malfunctions, causing recurrent seizures -- electrical storms in the brain -- that can be characterized by a range of symptoms, including sudden change in awareness, movement or sensation.

Each year, about 200,000 people in the United States are diagnosed with the disease, as was Supreme Court Chief Justice John Roberts after he suffered a seizure last year at his Maine vacation home.

"Many people with epilepsy do lead normal, productive lives despite the hardship of having this disorder," Kobau said.

The study, conducted by the federal government and published in the CDC's Morbidity and Mortality Weekly Report, estimates that 2.7 million people in the United States have epilepsy, and that it costs some $15.5 billion in medical care and lost or reduced earnings or productivity each year.

Hargis said the incidence of the disorder is expected to climb among veterans returning from Iraq or Afghanistan, where head injuries are common. "When you have a head injury, it's common for epilepsy to develop after a gestational period -- it could be a couple of months or it could be years," he said.

And the aging population is also expected to boost the incidence of epilepsy. Conditions of aging, such as stroke and Alzheimer's Disease, are also associated with a higher incidence of epilepsy.

The study was based on data from more than 120,000 adults in the Behavioral Risk Factor Surveillance

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Driving Habits of People with Epilepsy

By Ohio State University Medical Center
Jul 1, 2008 - 2:05:09 PM

(HealthNewsDigest.com) - COLUMBUS, Ohio – Research shows that people with epilepsy continue to drive despite medical restrictions. In a study from the Ohio State University Medical Center, 26 percent of patients with epilepsy reported having an accident due to a seizure and 19 percent said they were dishonest about seizures in order to drive.

The study, published in the journal Epilepsy and Behavior, found that prior attitudes and behavior are difficult to change and participants’ main reason for driving was due to their occupation.

“Instead of focusing on the dangers of driving for patients, it is important to discuss with patients how to overcome perceived and actual barriers to transportation,” says Lucretia Long, author of the study and assistant professor of neurology at The Ohio State University Medical Center. “Addressing health behaviors while counseling persons with epilepsy is also crucial.”

The study also suggests that persons with epilepsy would benefit from employers’ assistance with workplace programs and legislation supporting transportation resources. Allowing people with epilepsy to work from home and providing adequate public assistance are a few options.

The study found that 35 percent of patients said they were not confident to use public transportation. Some feared the possibility of having a seizure, which increases the risk for injury while walking to public bus stations. In addition, a large percentage felt that family and friends were not available to assist with transportation needs.

John Elliot is the co-author and clinical research data manager in the Department of Neurology at The Ohio State University Medical Center.

The study included a total of 213 participants who were asked to complete a 46-item questionnaire with all responses submitted anonymously.

Epilepsy can result from head injuries, lack of oxygen during birth, brain tumors and strokes. However, according to The Epilepsy Foundation, the cause of epilepsy is unknown in 7 out of 10 people. Furthermore, epilepsy is the third most common neurological disorder in the United States after Alzheimer’s disease and stroke. This disorder affects more than 326,000 children under age fifteen and more than 90,000 of them have severe seizures that cannot be adequately treated.

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Duxbury campgrounds welcome children with epilepsy

By Liz Hoffman

Brianna Sosa was halfway up the rock wall when the feeling hit. She knew what was coming. The seizures she experiences daily are familiar enough that she stopped her climb and made it down to the ground on time.

Within minutes, though, the 17-year-old was planning her next trip up the wall.

Sosa has epilepsy, just like almost everybody else at Camp Wee Kan Tu, which celebrated its 10th year this week at the grounds of Camp Wing in Duxbury.

The camp is run by the Epilepsy Foundation of Massachusetts, and it is the only camp in New England for kids with seizure disorders.

“Everyone here has seizures,” said Sosa, a counselor-in-training this year after four summers as a camper. “Nobody thinks it’s weird, so we don’t have to worry.”

Of all the challenges of epilepsy – strict medication schedules, attendant developmental problems, and the seizures themselves – the social stigma can be the most painful, especially for teenagers.

“Other diseases you can hide; seizures are right there for everyone to see,” said Eileen Salmanson, the camp’s co-founder. “It can be a very isolating disease.”

Not at Camp Wee Kan Tu. Seizures are an hourly occurrence here, and nobody points and stares.

“It’s like, ‘oh, well’ and back to playing kickball,” said Deb Mayo, a counselor who has lived with epilepsy for 45 years.

On its face, Wee Kan Tu looks like any other summer camp. A soccer game was under way on the field. In the dining hall, a cabin of 11-year-old boys were in the arts and crafts corner making scrapbooks. A banner for the camp talent show hangs over the stage.

A few things set the camp apart, though. “Epilepsy 101” is a scheduled activity, just like pool time or kayaking. The camp infirmary, stocked with gauze and calamine lotion at most camps, is staffed around the clock by two neurologists and three nurses. And four times a day, the head nurse makes the rounds, handing out dozens of pill cups to campers.

But all that is “just background noise,” said Geoff Fudge, a nine-year veteran of the staff.

“These kids have epilepsy the rest of the year; this week, they just go to camp,” he said.

Steven Shorrock, 10, climbed the rock wall and he has the picture to prove it.

“I’m just here to show that it doesn’t matter if you have epilepsy,” he said as he glued the photo into his scrapbook. “I can do the same things as other kids.”

The campers are not the only ones for whom the week at Camp Wing is a breath of fresh air. At least half of the counselors have epilepsy, and for many of them, camp is a learning experience.

Lisa Volkening, 31, was diagnosed when she was in fourth grade. But it wasn’t until she joined the staff at Camp Wee Kan Tu six years ago that she really came face to face with other people like her.

“I wish they’d had something like this when I was younger,” she said. “I spent so much time feeling awkward and not being a kid.”

Parents also benefit from the week-long camp, taking a break from the constant supervision and anxiety that are part of raising a child with special needs.

“It’s a gift to my husband and me,” said Gail Biancucci, whose son Brendan, 11, was at camp for the first time.

Brendan’s epilepsy is controlled, but at the cost of brain surgery that left him developmentally delayed and needing constant supervision. This week, says Biancucci, that job belongs to someone else.

“We can go to a movie or have dinner or finish a sentence or any of the other things that take a backseat with Brendan,” she said. “It’s a vacation for us, too.”

Liz Hoffman may be reached at lhoffman@ledger.com.

Duxbury -

A summer camp experience can be a life-changing event in a child’s life, but for many years, children living with epilepsy did not have that experience.

On June 20, Camp Wee Kan Tu at Camp Wing in Duxbury celebrated its 10th anniversary with another summer season of approximately 50 campers, all living with epilepsy. For one week, these children have the opportunity to just be a child among children just like them.

“There are 3 million American’s living with epilepsy,” said Rebecca Oliver, communications coordinator for the Epilepsy Foundation of Massachusetts and Rhode Island. “A child could go his or her whole life without ever seeing a camp; this brings the kids together and sets the stage for a life that can be lived without the stigma they are different. Everyone knows how to take care of them and five minutes later they are back to arts and crafts.”

Camp Wee Kan Tu is made possible through grants and donations, as well as volunteers, Oliver said. Through the Epilepsy Foundation of Massachusetts and Rhode Island, children with epilepsy from Massachusetts, Rhode Island, New Hampshire and Maine have the opportunity to spend a week of fun at camp with children just like them, she said. 

Doctors and nurses like Sarajune Dagen and Barbara Dworetzky, doctor of neurology at Brigham and Women’s Hospital, donate their time to provide a safe and healthy camp for the children. Dagen — or Nurse Sara, as she is known — has been a nurse at the camp for eight years. She said she came out one day and never left,

“It is a magical experience,” she said.

With a 2-1 staff-to-child ratio and a fulltime nurse and doctor on staff at all times, children with epilepsy can have a normal camp experience without the fear of being looked at weird or made fun if they have a seizure, camp We Kan Tu co-founder Jeff Robins said. Robins said he and co founder Eileen Salmanson heard about an epilepsy camp in Virginia while attending a conference for the American Epilepsy Society in Washington, D.C. The two thought it was a great idea and wanted to begin a camp in New England.

“Here seizures are about as significant of an event as scraping a knee when they fall,” he said. “After a child has a seizure, they get up and return to the activity they were involved in.”

Epilepsy Foundation of Massachusetts and Rhode Island board member Janet Rich said the camp has given her daughter Amanda the opportunity to become a part of a community and see first-hand that there are other children and adults just like her.           

“It gives the experience of camp where she would never be able to go to a normal camp because no camp takes on that liability,” she said. “An epileptic in the water is very dangerous; they go on boats, and swimming. It is all supervised to make it a safe environment. They climb a big wall; she would never have that experience. It is a neat place to go and experience what these kids experience. They have top doctors, top nurses, all who volunteer their time. It is an absolutely incredible situation they have created.”

Rich said not only does the camp give Amanda a chance to be kid, it also gives families a chance to relax without the constant worry that their child is in the other room having a seizure or is OK.

Amanda, who is now a counselor in training (CIT) at the camp, has been going to camp for nine years. She said she really enjoys all the people at the camp and doing all the activities. She enjoyed the fun of camp so much she wishes she wasn’t a CIT, because she has more work to do and it is more exhausting.

Children can only attend camp until they are 18, after that some of the children have the opportunity to become a CIT or even a counselor.

“It has been very rewarding on all counts,” Rich said. “She (Amanda) can have a normal camp experience where she can’t anywhere else.”

Another unique part of the camp is that several of the counselors have epilepsy, including Deb Mayo, who is also the administrative assistant at the Epilepsy Foundation of Massachusetts and Rhode Island. Mayo’s condition cannot be controlled by medication, and has tonic-clonic or grand mal seizures approximately every three to four months. At 54, she said she wishes they had a camp like this when she was a child; she always wanted to go to camp but never was allowed.

“This place is so exciting, so unbelievable. It’s my love, besides my grandson,” she said.

Lisa Volkening, the woman’s camp leader, had her first seizure when she in fourth grade. Today she is considered controlled because she takes medicine every day to prevent her from having a seizure. However, she said at camp it doesn’t matter if you have a seizure. Some kids may have six, some may have one, but there are trained staff to care of them and get them back to their activity.

“It is great to see the kids do everything that other kids would do at camp,” she said. “They have so much fun, and they have a seizure and keep going on. It is a part of camp life.”

Ian Moorhouse, the director of Camp Wee Kan Tu, has been watching youths with epilepsy enjoy camp life and form friendships with other kids just like them since the beginning.

“They get a big boost and feel better see they are not just the only one,” he said.

For information on the Epilepsy Foundation of Massachusetts and Rhode Island visit epilepsyfoundation.org/massri.

The multidisciplinary team of scientists pieced together information from clinical observations made in the first half of the 20th century with knowledge from modern genetics and molecular biology to show that an acid-activated ion channel in the brain reacts to a drop in pH (increased acid) in a way that shuts down seizure activity.

Adapted from materials provided by University of Iowa, via EurekAlert!, a service of AAAS.