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Something to SCREAM About: Party of Two: Neve Campbell uses acting fame to speak out for people living with epilepsy — starting with her cousin

Childers, Linda

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Linda Childers is a California-based health writer whose celebrity profiles have appeared in More and ePregnancy.

For more information about epilepsy, see RESOURCE CENTRAL on page 54.

Growing up in Canada, actress Neve Campbell and Coleen Campbell-Olwell were more like sisters than first cousins. Born just eight days apart, they loved playing dress-up and pretending to be princesses. While Neve favored ballet, Coleen became intrigued by the entire beauty process, watching her mom go through the daily ritual of styling her hair and applying makeup. It didn't take long for Coleen to begin honing makeup artistry on Neve and other willing subjects.

Figure. Neve defying...
Figure. Neve defying...
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Today, Neve and Coleen, both 32, have turned their childhood dreams into reality. Neve is an accomplished actress best known for starring in the Scream movie trilogy as the haunted protagonist, after breaking through on the “Party of Five” TV series. (This year she's appearing in the film Relative Strangers with Danny DeVito and a London play directed by Robert Altman.) While Neve is known for her acting, Coleen works behind the scenes as a Hollywood makeup artist.

Despite an impressive roster of celebrity clients including Bernie Mac and Fred Durst, Coleen's rise to aesthetic success wasn't always easy. At the age of 18, she was diagnosed with epilepsy, a condition that also affects her mother.

“I started having recurring seizures, and it was very scary,” Coleen recalls. “I didn't know what I was experiencing.”

She soon discovered it was epilepsy, a condition characterized by seizures that occur when neurological circuits misfire. Seizures can range from a short glassy-eyed stare to jerking movements or convulsions and loss of consciousness.

While relieved to learn she had a condition controllable through medication, Coleen remembers feeling embarrassed and worried about how others might react. She wondered what people would think if she had a seizure in public and whether they'd perceive her as disabled or incapable of working in a demanding job.

“I feared that people would reject me if they found out I had epilepsy,” she says. “There's still the misconception out there that people with epilepsy are different. When many people think of epilepsy, they automatically think of grand mal — severe — seizures, when there are actually many levels to it. A lot of people who have epilepsy are embarrassed or ashamed to say they have the condition.”

She has always felt comfortable confiding in Neve and, after her diagnosis, often turned to her cousin for support. Though an empathetic listener, Neve wished she'd had information about epilepsy to better address Coleen's fears.

“Coleen is now able to manage her seizures, but getting to that point was difficult,” Neve says. “When she was first diagnosed, she struggled to maintain her confidence and self-esteem. She worried about whether people would ridicule or reject her.”

While Neve did her best to support Coleen, she felt frustrated by lack of resources. According to a Harris Interactive poll conducted last year, many share Neve's frustrations; the nationwide survey showed that half of adults with epilepsy and parents whose children have epilepsy don't know their legal rights and protections concerning the condition. “It's OK to say you have epilepsy, and to know you have rights,” Coleen says.

Thanks to a support network that includes her husband, mother and cousin Neve, Coleen is thriving in her career and feeling great. Yet she and Neve empathize with the approximately 200,000 families each year who grapple with a new diagnosis of epilepsy or seizures. Their concern prompted them last year to help launch a national program called the “Bill of Rights for People Living with Epilepsy.”

“This program is designed to educate and empower those touched by epilepsy and to increase understanding of epilepsy in the general public,” Neve says. “The Bill of Rights is a document created by healthcare professionals and people living with epilepsy to provide guidance on managing epilepsy at school, in the workplace and in the healthcare system.”

Figure. PARTY OF TWO...
Figure. PARTY OF TWO...
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For the Campbells, that started at home. “My mom was diagnosed with epilepsy in the 1950s,” Coleen says. “While a lot of progress has been made in the field, it's still not a condition that many people feel comfortable discussing. Having a mom with epilepsy has shown me how the condition can affect different people. My mom has never been able to control her seizures, yet she's had a fulfilling, wonderful life and raised a family who loves her very much.”

Neve and Coleen hope their efforts will help educate the public about epilepsy and seizures, conditions that affect 2.7 Americans. Neve had similarly used her celebrity to raise awareness and funds for another neurological condition when her younger brother Damian was diagnosed with Tourette's syndrome, which is characterized by recurrent involuntary movements and vocalizations called tics.

“People who have family members with epilepsy or other medical conditions need to educate themselves as much as possible about their loved one's diagnosis,” Neve says. “I have always tried to provide a supportive environment for Coleen. To me, she's just Coleen, my cousin and best friend, and I want to be there for her just as she's always been there for me.”

©2006 American Academy of Neurology

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