College opens new chapter in life of chronic-pain victim

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Lebanon Daily News.com, originally uploaded by rsdscrpsnews.

College opens new chapter in life of chronic-pain victim
By JOHN LATIMER
Staff Writer
Lebanon Daily News

Today is the first day of the rest of Amanda Ebersole’s life.

Cliché that may be, but it’s also the bona fide truth. Because Ebersole began classes at Edinboro University today.

Attending the college near Erie is the first step on a promising path for the 24-year-old North Lebanon Township resident who 10 years ago contracted a rare and painful neurological disease that has since dominated her life.

It is a bit like coming out of a long, dark tunnel into bright sunshine, she said during an interview at her home last week.

“Finally, I have some good news,” she said, a bright smile lighting up her face. “For 10 years, it has just been bad news after bad news.”

Ebersole was a ninth-grader at Cedar Crest High School when her life was changed forever by what started as a simple ankle sprain. The injury did not respond to treatment; it got worse, and eventually developed into a little-known disease called Reflex Sympathetic Dystrophy Syndrome.

Readers may recall Ebersole, whose story was first told in the Lebanon Daily News five years ago. At that time, she was preparing to graduate from Cedar Crest, a major accomplishment in itself because she had to rely on a tutor after the disease made attending classes impossible.

Also known as Complex Regional Pain Syndrome, RSDS affects millions of people in the U.S., according to the Reflex Sympathetic Dystrophy Syndrome Association. The precise cause of the disease is still a mystery, and a cure has yet to be found. Researchers believe it is the result of a malfunction in a person’s sympathetic nervous system in which the brain continues to send pain signals to damaged tissue, causing swelling and an excruciating burning sensation that spreads to surrounding tissue and damages them in an endless cycle of pain.

Ebersole’s RSDS specialist, Dr. Robert Knobler, who himself suffers from a milder form of the disease, has described the pain as rubbing sandpaper on badly sunburned skin — without stopping.

If caught in its early stages, there is a better chance for halting progression of the disease. But when undiagnosed, as in Ebersole’s case, it can become full-blown and spread throughout the body.

The past decade of Ebersole’s life has been spent coping with the disease by trying to manage the pain and stem its destructive and relentless march through her body.

Mostly, it has been a losing battle, with frequent trips to the hospital. Tragically, an attempt with an experimental drug led to a side-effect that caused Ebersole to lose the use of her legs. Today, she relies on a mechanized wheelchair to move about.

Through it all, Ebersole has maintained a remarkably positive attitude. She gives credit for that to the support she receives from her family and friends, many of whom are RSDS suffers with whom she chats with online.

Unable to fully care for herself, Ebersole has continued to live with her parents, Kenneth and Kathy Ebersole, in their home on Heilmandale Road.

Until recently, the idea of leaving home, much less attending college, was a far-fetched one for Ebersole.

That all changed in November when Dr. Stuart Hartman, a doctor who treated her at the Good Samarita Hospital’s Hyman Caplan Pavilion, told her that she was eligible for tuition assistance from the Office of Vocational Rehabilitation, a division of the state Department of Labor and Industry.

“I didn’t know anything about it,” Ebersole said. “I was just so excited leaving his office that day. He had given me the number of the Office of Vocational Rehab, and I got right on the ball that day and called.”

Ebersole was put in touch with a counselor and immediately started to make plans to attend the Lebanon campus of Harrisburg Area Community College. But those plans changed after she spoke with one of her online buddies about Edinboro University’s program for the disabled.

Since the 1970s, the university has been a leader in providing educational opportunities for the disabled by making the campus accessible and offering around-the-clock support services, including personal-care attendants, said Bob McConnell, director of the Office of Students with Disabilities. Of the university’s 8,000 students, 450 are disabled, he said.

“Our goal is really to provide a university where disabled students can come here and be college students just like everybody else,” McConnell said. “We want to give them an opportunity to succeed, and what they make of it is up to them.”

Ebersole checked out the Fighting Scots’ Web site and liked what she learned about the school and its nearly 600-acre campus. She applied online and was accepted two weeks later.

When visiting the campus with her mother for the first time this spring, Ebersole was not disappointed.

“Every student is willing to help you,” she said. “They don’t turn their nose up at you like you are lower than them. It is just a really friendly place and I fell in love with it.”

At first, the idea of attending Edinboro was a bit daunting for her and her parents because it is a five-hour trip from home, Ebersole admitted.

“They were excited about me going to HACC but then when Edinboro came up, mom was a bit hesitant about her baby living so far,” she said with a laugh that comes easier and more often than it has in years. “My mom and I have always been so close.”

Ebersole’s tuition and most of her additional expenses will be covered by scholarship grants and the state Office of Vocational Rehabilitation. Joining her is her service dog, Ami, a black Labrador Retriever.

“I already got him an Edinboro bandanna so he is going to be dressed for the first day of classes,” she said.

Even though she will still be dealing with her RSDS, Ebersole is determined to make the most of her time at Edinboro. She plans to major in social work and eventually get a master’s degree. Having spent so much time in rehabilitation-treatment centers, she thinks working in one might be a good fit.

“I really want to work at a rehab hospital, like Moss Rehab (in Philadelphia),” she said. “I had a wonderful social worker there, and she inspired me.”

——————

http://www.rsds.org

http://www.edinboro.edu

http://www.dli.state.pa.us/ovr

For the original story online, please click here: http://www.ldnews.com/news/ci_2983394

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