New Castle News

Entertainment

November 13, 2012

‘Sleeping Beauty Syndrome’: New Castle native on TV today to discuss her medical condition

(Continued)

NEW CASTLE — LIFE WITH KLS

As one might imagine, Nicole misses a lot of school whenever an episode comes upon her. The West Allegheny High junior — who also attends the Parkway West Career and Technology Center to study digital multimedia — must take classes during the summer to make up whatever she misses during the school year.

Class time, though, isn’t the only thing that the condition costs her.

“I hate having KLS. I hate how it steals my life away,” Nicole writes on www.klslife.com in an article titled “It’s Hard Being a Kid with KLS.”

“(It) has not been kind to me in terms of my friendships and relationships. I had one guy who was fond of me, but unfortunately, he lost interest during one particularly long KLS episode.”

Nicole writes that she also lost childhood friends whose families found it difficult to comprehend and accept what she was dealing with. She credits her mother with working to share websites and information with her peers to foster understanding.

“I do have a couple of friends who are always there for me during an episode,” Nicole writes. “Sadly, there are still kids who make mean comments about KLS because they don’t understand it.”

Her overriding wish: “I would love to just be a normal kid who can go to school, attend birthday parties and school functions, and participate in school activities. I miss cheerleading so much.”

PROGRESSION

Nicole relies on an anti-seizure drug and another medication called provigil to manage her condition. The latter, her mother said, “helps spread her episodes further apart, to every nine months from every two weeks.”

However, provigil also costs about $2,000 a month, and after Nicole’s father recently changed jobs, his new health insurance provider has refused to pay for it.

“Hopefully, that will get straightened out soon,” Vicki said.

The family has been told that some KLS patients will go into remission after 10 years. While Vicki remains optimistic about that, she hasn’t seen much evidence of it in Facebook and other online groups of KLS sufferers.

“I still see 40-year-olds who are having their episodes; they’ve had it since they were 16, 17 or early 20s,” she said. “It would be great if we could go two years without one, then maybe I’ll say, ‘OK, she’s in remission now.’

“But I’ve only seen two people who haven’t had episodes in the last four years.”

Nicole, though, doesn’t let that stop her from looking forward to the day when KLS no longer robs her of living.

“After KLS has left, I hope to enjoy everything that life has to offer, including family vacations,” she wrote. “My very first family trip was to Disney World, but I don’t remember what happened. I got into an episode the day we arrived in Florida and didn’t recover until just after we got home.

“My family travels to Florida every year, and it’d be great to go and not have to worry about KLS.”

(Email: d_irwin@ncnewsonline.com)

 

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