EDITOR'S NOTE

(Editor's note: March 26 is “Purple Day,” marking the global recognition of epilepsy awareness by wearing purple to show your support. Epilepsy afflicts 15 in every 15,000 people and 1 in every 100 teens. To further educate our readers about this brain seizure disorder the Uintah Basin Standard and Vernal Express are running a two-part series recognizing people in our community who live with epilepsy, and the support group that provides them and their families with an important resource.)

When 28-year-old Daniel Allred had his first seizure after being seizure free for nearly six weeks following surgery to remove a growth in the middle of his brain, his mom VaLinn sat and cried all day.

The month and a-half respite marked the first time the Vernal man had not suffered from epileptic seizures almost daily since infancy.

“We've never been able to find any medication to control his seizures — ever,” VaLinn Allred said. “Medications only made it worse. The one drug he was on, he went up to 16 seizures a day.”

After their son went for so many consecutive days without a seizure the Allreds were hopeful that the surgery Daniel underwent over a year ago would stop the relentless and sudden discharges of electric activity in his brain.

The surgery was certainly worth the risks that came with it, his mother said. It has made a positive difference in Daniel's life, cutting the frequency of his seizures in half.

For the Allreds, living with Daniel's epileptic seizures — which are triggered by any extreme, the heat, the cold, being too hungry, being too full — has always been a normal part of life even though there is no history of epilepsy in their family.

Although his parents chose to home school Daniel because the frequency of his seizures made it too difficult for him to attend public school, their third child of five didn't miss out on much.

“He always went to scouts, he had some very good leaders who worked with him all the way through. He became an Eagle Scout in 2000,” VaLinn Allred said. “He did everything we did. We went to Bryce Canyon a few times. You have to take precautions, but you can't be shut up in a bottle.”

He's been his mom's assistant Cub Scout master and his dad's assistant Scout master.

Ninety-nine percent of the time when you see VaLinn Allred, you see Daniel. When Daniel has a seizure in public, people generally know what to do, according to his mom. At Walmart, she said, the employees all know the drill — they form a circle around Daniel when he seizes to make sure he is safe, and simply ask customers to walk around.

“Overall people have been really good, really good,” she said, adding, “Daniel wants to have a life and live too; you try to hit a happy medium and do the best you can.”

SUPPORT GROUP

There is no registry for people with epilepsy, a disorder which is known to be chronically under-reported. Statistics on epilepsy are collected by talking to doctors and specialists who treat patients with epilepsy. That is how it has been determined that 15 out of every 15,000 people will have some form of seizure-related disorders known as epilepsy.

The small group that meets the first Wednesday of each month on the second floor of the Uintah County Library is among these numbers. The Uintah Basin Epilepsy Support Group is one of just five such organizations in Utah. Sanctioned by the Epilepsy Association of Utah, the group's members are reaching out to others in the community who have epilepsy — or are the family member of someone with epilepsy. New members are always welcome.

Daniel Allred’s outgoing personality makes the group a perfect fit for the artistic young man who enjoys striking up conversations with strangers and friends alike. The support group gives him the opportunity to be with others who can empathize with the daily challenges of epilepsy.

“The (support) group gives him some place to go and visit and talk to people who have the same problems and know what we are going through,” VaLinn Allred said.

Speakers are invited to the monthly meetings to talk to families about a wide-variety of topics — from special diets for people with epilepsy to learning about the special needs registry in Vernal.

Kari Tollefson Hatch spearheaded the efforts to bring the epilepsy support group to Vernal. The 31-year-old business student at Uintah Basin Applied Technology College began having seizures at 18 months. The febrile seizures that Hatch suffered as a child were caused by fevers.

Most children with this type of seizure disorder will eventually grow out of them, Hatch said. In fact, all of Hatch’s sisters who suffered from the seizures — which were determined to be genetically linked — have grown out of them, but that did not happen in her case.

A near drowning when she was 5 was suspected to have caused additional brain damage, possibly to the area already triggered by seizures, exacerbating her condition.

Medication has been successful in controlling Hatch’s “tonic clonic” seizures (formerly called gran mal seizures). However, her less severe, or “partial and complex” seizures dramatically multiplied 10 years ago.

In the summer of 2003 Hatch underwent a highly complex surgery to remove scar tissue in the left hippocampus of her brain. Through extensive testing doctors were able to pinpoint this area as the site where Hatch’s seizures were originating.

After surgery she suffered excruciating headaches until doctors could find the right medication to ease the pounding sensation. But the most difficult part of her recovery was relearning how to do almost everything she had taken for granted before.

“I had to fully start all over again to just function properly. I had to learn how to do my daily routine, how to cook and to clean,” she said.

Following her long and arduous recovery, Hatch’s condition has improved immensely.

“The surgery cut down seizure activity by three-fourths. After trying multiple medications throughout the years I am now on a brand new medication which is doing remarkably well,” she said. “We are all grateful.”

Hatch is on a five-year waiting list for a seizure alert dog. She has three more years remaining before she will get a dog that has been trained to alert her to when a seizure is triggered.

Two years ago Hatch said she was feeling “frustrated” by what she felt was a nagging lack of control over her life and decided it was time for her to do something.

“I had an idea and wanted to help others,” she said.

That's when she took the steps to establish an epilepsy support group in the Uintah Basin. Now Hatch is close to completing specialized training offered through the Epilepsy Association of Utah HOPE (Helping Other People with Epilepsy) mentoring program. She will soon be prepared to speak to schools, church groups, clubs and civic organizations to promote epilepsy awareness and education.

EDUCATING ABOUT EPILEPSY

Epilepsy is often a kept secret, said Richard Montano, executive director of the Epilepsy Association of Utah.

“Adults won't admit it, there is the fear of losing their job which would mean losing their insurance. That's the reality,” Montano said. “When we start looking at these issues it becomes a cycle of social issues.”

If admitting they have epilepsy is worrisome for adults, imagine how a teen who suffers from seizures feels, Montano said. “You see these young adults who try to get into social life — there is driving and dating. So they don't want anyone to know. They don't say anything to anyone.”

Medication meant to control seizures often has side effects that can sometimes be worse than the seizures themselves, and so having a normal social life is often impossible.

But the message that Montano wants to spread when it comes to epilepsy is that those who deal with the seizure disorder should be treated fairly and valued as contributing members of the community.

“We are trying to educate the community at large that we are the same as anyone else. It's this huge struggle to get this information out there,” Montano told members of the Uintah Basin Epilepsy Support Group in Vernal.

“It flies under the radar,” he said, “it’s not contagious.”

Anyone who has two or more seizures has epilepsy, Montano said, adding that some of the greatest minds in this world had epilepsy: Vincent van Gogh, Sir Isaac Newton, Charles Dickens, Agatha Christie, Leonardo DiVinci, and Michelangelo.

When he came to Vernal recently, Daniel Allred showed Montano a few of the arrowheads he carved from stones.

Allred’s arrowheads look so authentic that he has been able to open his own business, “Points to Ponder,” and has sold them to people throughout the country.

Epileptics are often found among those with artistic talents, Montano noted.
Children between birth and 5 years old have the highest rate of epilepsy; senior citizens over age 65 have the second-highest rate and minorities — particularly Native Americans — have higher rates of epilepsy than the rest of the population, Montano said.

Montano said he is working closely with Forrest S. Cuch, director of the Division of Indian Affairs for Utah, to provide resources that will help Native Americans who deal with epilepsy.

“People with epilepsy have twice the suicide rate; it is exacerbated by depression and loneliness and unemployment,” Montano said. “Support groups can help people share their problems and concerns.”

PURPLE DAY

March 26 is “Purple Day” — a movement started in 2008 by a young Canadian girl to an effort to bring about a global awareness and education about epilepsy — a seizure disorder that affects an estimated 50 million people worldwide. People are asked to wear purple on March 26, as a show of support for those who have epilepsy.

Nine-year-old Cassidy, of Novia Scotia, began Purple Day because she “wanted people to know they are not the only ones with epilepsy. When I first got epilepsy I thought I was the only kid with it. I learned that there were a lot of other kids and big people with epilepsy from all over the world. I also want people to know that there are different types of seizures and not to be afraid of seizures,” Cassidy wrote on her Purple Day Web site. Lavendar is the color that represents epilepsy.

An aid for families who have children with epilepsy is a little-known summer camp in Utah held the last week in July in Park City at the National Abilities Center. The camp accepts children with epilepsy aged 10 to 18, said Montano.
“Children who need 24-hour care can have their parents invited at no charge,” he said. “The kids love it, we hear them say all the time at camp, ‘I can do it! I can do these things!’”

Because the cost of the camp can be prohibitive for some families, scholarships are awarded. Montano said that Uintah Basin businesses that would be willing to donate to a scholarship can help send local children to the weeklong camp.
Hatch and her husband, Junior, are considering serving as camp volunteers this year to mark their anniversary.

To find out more, visit the Utah Epilepsy Foundation Web site at www.epilepsyut.org

(Next week in part two of our series on epilepsy awareness, we will meet a father who lived with epilepsy as a teenager and who now helps his own son manage his epilepsy as he lives an active life as a teenager.)

SIDEBAR

Uintah Basin Epilepsy Support Group

The support group meets the first Wednesday of each month and will hold their next meeting on April 7, at 7 p.m. on the second floor of the Uintah County Library. For more information on the support group call Kari Hatch at 790-8589.
Members of the Uintah Basin Epilepsy Support Group meet on the first Wednesday of each month at the Uintah County Library at 7 p.m. Speakers come to the meeting to address specific needs and challenges of those with epilepsy. Recently the executive director of the Utah Epilepsy Association came from Salt Lake City to talk to the support group.