She’s in a painful fight

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She’s in a painful fight
Ashley Schwochow getting help from her family while trying to beat rare disease
By MATT SANCTIS
Staff Writer

Just two years ago Ashley Schwochow, then a junior at Bettsville High School, was an honor roll student who played basketball and volleyball, painted and even helped teach second grade to mentally challenged and handicapped students.

Now a senior, she is confined to a wheelchair and seeking specialized therapy at a treatment center in Wauseon, hoping to relieve pain from a rare nerve disease that makes it difficult even to take a bath. However, Schwochow is doing everything she can to fight the disease and bring some attention to the disorder. In the meantime, her family is doing whatever it takes to help her in her fight.

“In a way, it’s changed the whole family perspective,” Ashley said during a teleconference call from the center in Wauseon.
The disorder, called Reflex Sympathetic Dystrophy syndrome, is diagnosed two to three more times as often in women as it is in men, according to The Reflex Sympathetic Dystrophy Syndrome Association. The average age when it is diagnosed is 42, and there is no cure. Its symptoms include moderate to severe pain, changes in skin temperature and limited range of movement, and it afflicts between 200,000 and 1.2 million Americans.

For Ashley, it started as a fractured foot while playing basketball in gym class. She went to a local doctor who placed her in a cast until the wound healed. But even after the fracture had mended, she was still often in pain and sometimes had trouble walking. The disorder often starts with an injury such a sprain or a fracture, but with RSDS, the nerves begin sending constant pain signals to the brain even after the injury has healed.

Although she sought medical help numerous times, she said most doctors were not aware of the disorder and she continued her normal activities for a full year.

“It kind of made me learn although (doctors) diagnose you with something, it doesn’t always mean it’s right,” she said.

As the disorder progressed, it crept up from her foot and into her right leg, eventually covering the right side of her body. For a student as active as Ashley, the toughest thing was not being able to play sports or hang out with her friends. Basic activities such as taking a bath or even cutting her fingernails became extremely painful, and even a slight touch or a breeze causes her nerves to send the pain signals to her brain. The disease also affects the skin. Her fingernails have become so brittle, the entire nail snapped off the second the clippers started to cut, her father said.

The last time her nails were cut was several months ago, and what would be a simple process for most was so painful it took five hours.

However, with her family’s help, she is fighting the disorder and is trying to raise awareness for anyone else in the area who might be afflicted. She noted although there seem to be few in the region who have been diagnosed, Internet support groups have been instrumental in helping her and her family understand all that the disorder entails.

But fighting the disease is expensive. Just to cope with daily activities such as eating or sleeping, she now takes more than 20 pills a day. In some cases, insurance companies have refused to pay for the medication even though they have been prescribed because she is a minor, said Stephen, her father. In some cases, it can take three years before the right cocktail of drugs can be found to reduce the pain.

“We were just stunned on how horrible (RSDS) sounds,” Stephen said. “We were in shock.”

Now, she is seeking a specialized treatment in Wauseon using hyperbaric oxygen therapy. Patients are placed in a special chamber that is pressurized, while the patient receives a large amount of oxygen. The goal is to increase blood flow to reduce swelling and the pain. However, the treatment is not covered through insurance.

Ashley’s family has rallied around her, and her mother, Ann, even quit her job to care for her full-time, and has stayed with her daughter throughout this procedure. While Ashley is in Wauseon, Stephen has been making the lengthy drive at least twice a week.

Ashley is hopeful the treatment will reduce the pain and keep her RSDS from spreading. During the teleconference with her father and grandparents, she was excited as she was able to hold her hand in a bowl filled with water and olive oil. Once she has it under control, Ashley said she plans to graduate this year and become either a nurse, or someone who helps educate the mentally handicapped.

Her grandfather, Larry, said it is amazing how the community has supported the family throughout the ordeal. Krista Harrison, Dean of students of Bettsville High School, said the school was even able to enroll Ashley in online courses so she will graduate with her classmates. Harrison was Ashley’s kindergarten teacher, and said she is amazed at what a dedicated person Ashley has become over the years.

“She’s had a wonderful support system in her family and she’s had a wonderful attitude about this,” Harrison said.

The family has had to seek help from the community to help pay for the treatments. Donation cans with Ashley’s photo are spread out in Fremont, Tiffin, Rising Sun and Fostoria. Local banks, churches and community groups have also donated time and money to assist with fund-raisers.

For now, Ashley is simply anxious to continue her treatment and continue to spread the word about the disorder that has had such an impact on her life.

“You take it day by day,” she said. “You’ve just got to think positive about it.”

E-mail Matt Sanctis at msanctis@fremont.gannett.com

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