Kelly Pretz admits she probably won the lottery of seizure disorders.
“I’m very lucky,” said 15-year-old Kelly about her experiences with benign rolandic epilepsy. “The doctor said it’s the only type of epilepsy you can outgrow.”
Still, being unexpectedly gripped in seizures that produce uncontrolled movements, sounds, excess saliva, pain and loss of consciousness can be frightening at any age. For a young girl — Kelly was 10 when first diagnosed — the onset of epilepsy can be especially traumatic.
Her initial reaction was confusion, the Brielle teenager said.
“I didn’t know what was happening to me,” she said. “I’d never heard of epilepsy.”
She also was unaware that the perplexing “feelings” she had been experiencing were partial seizures, and she didn’t report them to her older sisters, Ami, Jenni and Kimberly, now 18, 22 and 26 respectively, or her parents, Ellen and Todd Pretz.
The only clue, in retrospect, Todd said, was when “she would suddenly run to the sink to spit out saliva” that was rising in her mouth. But she never talked about the buzzing in her head or other symptoms, her dad added.
When the partial seizures ultimately accelerated into a gran mal seizure, the entire family took notice.
She was diagnosed and treated at Children’s Hospital of Pennsylvania (CHOP) in Philadelphia.
Luckily, again, she received a medication — Trileptal — that proved effective in controlling the seizures. Life resumed, but with restrictions — no bike riding, no baths, no attending sleepovers. And some of the medication’s side effects, such as drowsiness, were sapping her energy.
And Kelly — because someone in the medical community cautioned her about letting others know about her condition – took the advice to heart and kept it secret from her friends. Her social life suffered, because her peers thought she was avoiding them.
Meanwhile, she poured her feelings out in a book, a novel for young people. “Rain at Midnight … and the most secret of secrets,” which tells the story of a young girl who hides her epilepsy from others, went on sale this summer at Booktowne in Manasquan, which will host a book signing on Oct. 15.
“I didn’t know she was writing it,” Ellen said, “until she came up to me one day and said, ‘Mom, I wrote a book.’ ”
It’s her passion, now, to raise awareness about epilepsy, Kelly said. “I want people to know it’s not something to be afraid of, and it’s not contagious.
“I’ve learned so much from the Epilepsy Foundation” of New Jersey where she volunteers weekly. “I want to pass on what I learned,” Kelly said.
She assists in the foundation’s Wall office, “but the most beneficial thing she does for us is as a mentor to kids and teens, and moms of a newly diagnosed child,” said Andrea Racioppi, associate director of the foundation. “And this past summer, she and her mother put together two books for newly diagnosed families. It’s a fabulous resource.”
The state organization plans to honor Kelly at an awards dinner on Sept. 27 as its Community Citizen Volunteer of the Year.
Education is key to raising awareness, Racioppi said.
Ellen said that adults are hardest to educate, noting a teacher expressed fear about having her daughter — an “A” student — in her class.
The foundation provides free training sessions to fifth-graders in schools throughout the state, Racioppi said. “But sometimes we reach out to schools and they say ‘we have no one with epilepsy.’ That’s pretty astonishing, considering one in 100 people have epilepsy and one in 10 will experience a seizure in their lifetime.”
Kelly’s awareness-raising has extended to television: She was featured on an MSNBC health program last spring and recently was filmed for NBC’s “Teen Kids News” to air sometime this fall.
She incorporated epilepsy awareness as the theme of her project to earn her silver Girl Scout award, and Kelly creates and sells purple-and-white beaded bracelets at Manasquan High School, where she’s a sophomore, for National Epilepsy Day, or Purple Day, in March.
Her seizures, meanwhile, may have run their course. In June, she stopped taking her medication; it was her decision, her mom said. She returns to CHOP for an electroencephalogram (EEG) every six months, and her last test was free of seizure patterns. Previously, the brain study registered 30 internal seizures during a 20-minute period.
She may be done with seizures, Kelly said, “but I’m not done raising awareness. This is always going to be something special I want to be doing, that I’m very passionate about.”
In the beginning, “I didn’t like writing, but it was difficult to know if everybody fully gets it, so I just started writing it down. Now I like writing a lot,” she said.
Kelly is working on several more books, Ellen said.
Kelly’s also a member of her high school Key Club, band and chorus, and the town’s community band.
“I’m busy,” Kelly said, “but I can do it.”
Source: APP.com
