nicole's epilepsy

Written by Lacey McLaughlin, Staff Writer at The Dayton Beach News Journal, April 24, 2012

PORT ORANGE, FL—Nicole Newbern doesn't remember her body convulsing as she hit the concrete outside her home.

When she woke up with a bruised and bleeding face on that January day in 2011, her boyfriend explained that she had suffered yet another grand mal seizure.

In 2008 doctors diagnosed Newbern with epilepsy—a neurological disorder that forced her to move back in with her parents and put her future career plans of becoming a nurse on hold.

That same year, Newbern suffered her first seizure a week after she completed coursework at Daytona State College to become an EMT. She was working full time as a cashier at Walmart and after suffering several seizures at work, Newbern said her employer let her go because of missed time. The seizures come with little warning and Newbern suffers an average of two-to-three minute-long seizures once a week. The disorder also causes her to have partial seizures, nonconvulsing seizures called absent seizures and hand tremors. Shortly after her diagnosis she fell into a deep depression.

"You feel a rage when everything gets taken from you," the 23-year-old Port Orange resident said. "I can't take a shower unless someone else is home. I can't drink out of a glass cup because I might have a seizure and fall on it. I couldn't have a drink on my 21st birthday because of my meds."

Tired of the stigma that's often associated with epilepsy, Newbern started a Facebook page to document her daily struggles. A photograph of her resembling a defeated boxer appears on her page. Some of her followers also took her cue, posting photos of their own post-seizure wounds: An elderly man with a black eye, a little girl with a broken collarbone, and others with busted lips or bruised faces.

"The picture shows that epilepsy is dangerous—not only in the fact that my brain is shutting down temporarily, but that my environment is dangerous all the time," Newbern said.

For people who are embarrassed about their disorder or trying to keep it a secret, she posts their questions anonymously to help them find answers about the disease. The Facebook page, "Nicole's Epilepsy," now has 1,625 followers.

"Thank you for making this page," a follower from Shreveport, La., wrote on April 13. "It makes me feel not so alone to know people go through struggles like I do every day."

Newbern said she identified with the people who were experiencing similar setbacks.

"At first I wanted to run and hide from it," she said. "A lot of people have really good questions, but they are shy and don't want to use their names. I get so many questions I can hardly keep up."

Newbern is one of 2.7 million Americans who suffer from epilepsy, according to the Epilepsy Foundation of Florida. As with 30 percent of those with the disorder, doctors have not been able to control her seizures with medical treatments. A study by the Institute of Medicine released earlier this month found that one in 26 people may develop epilepsy at some point in their life.

After accumulating more than $62,000 in medical debt and suffering from the disorder for three years, Newbern qualified for Social Security disability benefits. She can't drive or be left alone at home. Her stepfather, who works nights, stays with her during the day.

Newbern recently went through neurological testing at Shands at the University of Florida's Epilepsy Monitoring Unit in Gainesville where doctors attempted to pinpoint exactly where the seizures occur in her brain. Through the testing she was able to adjust her medication, which has helped ease her partial and absent seizures.

Art became an important outlet for Newbern to deal with her disorder. She uses her parent's garage as a studio where she paints, makes journals and sculpts. She also makes jewelry, which she sells to raise money for the Epilepsy Foundation of Florida.

On Saturday, the Epilepsy Foundation will honor Newbern for her advocacy in the epilepsy community during the Walk the Talk fundraiser at Mary McLeod Bethune Beach Park in New Smyrna Beach.

"She has done a complete 180 from the date of diagnosis to where she is now," said Epilepsy Foundation of Florida case manager Ericka Kaelin. "She is still struggling to gain seizure control but she doesn't let that get her down."

Please visit Nicole's Facebook page: https://www.facebook.com/NicolesEpilepsy
Please share Calvin's Story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

Nicole Newbern's wounds sustained during a seizure

1 comment:

  1. What a photo! I really like the description of her looking like a boxer after a match. I think this photo is similarly powerful: http://mahenge.wordpress.com/about/mahenge-epilepsy-clinic/ (second photo down). I found this clinic when doing independent research about epilepsy and human rights this semester. Many people in Tanzania and other Sub-Saharan African countries experience severe burns because they fall into open fires used for cooking. There is such severe stigma attached to epilepsy in many parts of Sub-Saharan Africa that family members and friends are afraid to pull them out of the flames. Maybe falling into the fire is an apt metaphor for seizures: what is usually unharming and culturally normal can suddenly become threatening to people with epilepsy.