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Saltsburg woman's career derailed, set on course by MS diagnosis

Patrick Varine
| Sunday, June 11, 2017, 11:00 p.m.
Jenny Willis, a graduate of St. Vincent College in biology and cell and molecular biology, on Thursday, June 1, 2017. Willis wrote a thesis on multiple sclerosis, which she has been suffering from herself for 17 years.
Shane Dunlap | Tribune-Review
Jenny Willis, a graduate of St. Vincent College in biology and cell and molecular biology, on Thursday, June 1, 2017. Willis wrote a thesis on multiple sclerosis, which she has been suffering from herself for 17 years.
Jenny Willis, a graduate of St. Vincent College in biology and cell and molecular biology, on Thursday, June 1, 2017. Willis wrote a thesis on multiple sclerosis, which she has been suffering from herself for 17 years.
Shane Dunlap | Tribune-Review
Jenny Willis, a graduate of St. Vincent College in biology and cell and molecular biology, on Thursday, June 1, 2017. Willis wrote a thesis on multiple sclerosis, which she has been suffering from herself for 17 years.

A career change is a big decision and often is accompanied by unforeseen circumstances.

Jenny Willis of Saltsburg, however, could never have imagined the path her career would take — first derailed, then set back on a steady course, by a diagnosis of multiple sclerosis.

Willis, 39, was a linguist in the U.S. Army, specializing in Slavic languages, when she began experiencing numbness in her right side in 2000.

“Eventually, I was paralyzed on my right side,” she said. “I spent about a month in the hospital, and I was diagnosed after a spinal tap showed myelin protein in my spinal fluid.”

Multiple sclerosis, or MS, causes a breakdown of the myelin protein that sheaths nerve cells in the brain and spinal cord and damages the nervous system's ability to communicate with the rest of the body. It can lead to a host of symptoms, including partial blindness, double vision, muscle weakness and trouble with sensation and coordination.

Willis was deployed to Bosnia after the Bosnian War in the 1990s to work in human intelligence operations.

“I can't point to one specific thing, but I do know that chemicals were involved (in my MS diagnosis),” she said. “There were crop dusters over our base, American planes, and they would spray. And people were getting sick.”

She and other service members received vaccinations “after our vaccination records were ‘lost,' ” she said.

After a five-year review process, Willis received a medical retirement from the Army.

Willis and her husband, Clyde, were both linguists and met during their time in the military. By fall of 2000, they were back in the United States, stationed in Colorado and eventually moved to California and Texas.

He was serving in Iraq, and Willis was at home with the couple's first child.

“My MS just kept relapsing and relapsing,” she said. “When (Clyde) came back, my health was still deteriorating.”

Clyde said it was a frightening experience at times.

“We have two children, and I'm working,” he said. “We'd kind of gotten into the normal flow of life (before) and were comfortable with things. So I wasn't sure how everything was going to turn out as the years went on.”

With no family and few friends in their new home, Clyde was allowed to stay home on hardship. But things were still tough.

“He would get a job, my health would deteriorate, and he would have to quit to help take care of me,” she said. “Eventually, my health was so bad that my husband said, ‘We need to get back to your family.'”

They moved to the Derry area, where Willis grew up. With family to help, she had a chance to re-evaluate things.

“I thought, ‘I'm in the prime of my life, and I can't even pick up my kids or play with them,'” she said. “I was half-blind, I'd lost hearing in one ear, and I couldn't walk on my own. I thought there had to be a better way.”

She began researching MS at home, trying out different dietary and herbal combinations and keeping track of what worked and what didn't. She was taking 13 different prescription medications, and as her diet research progressed, she stopped taking them.

“The doctors told me that I'd be in a wheelchair the rest of my life, and now I was getting better,” she said. “To come off all those medications and still be healing, it was just crazy. Unfortunately, the doctors also thought I was crazy. But I'd stopped the medications, and just by changing my lifestyle and foods and supplements, I was seemingly healing this disease that they said was terminal.”

Willis became active again. She began going to the gym and teaching dance classes at Pazaz Christian Dance Academy in Southwest Greensburg. But she knew her research wasn't finished.

“It got to the point where I needed to learn science,” she said. “I needed to know what was happening on a molecular level.”

She enrolled at St. Vincent College to pursue a degree in biology and worked with associate professor Bruce Bethke on her three-semester senior research project, which is required of all biology graduates. But unlike the typical research project, Willis was testing the hypotheses she had developed in treating her own body.

“We looked at whether we could reproduce her diet — and the results — in animals,” Bethke said.

Conducting trials using mice, Willis wrote her thesis about the effects her ketogenic diet — a high-fat, low-carb diet designed to force the body to burn fats rather than carbohydrates — had on MS.

In the course of the research, she discovered a particular gene — peptidyl arginine deiminase 2, or PADI2, which is over-expressed in people diagnosed with MS — whose expression was almost completely negated by the diet.

“I had a hunch there would be good results, but I didn't know they would be this significant,” she said.

Willis graduated this spring. Her husband said he was overjoyed with the results of her diet and her schoolwork.

“I was really happy to see her come back,” he said. “For a number of years, she wasn't able to do quite a lot of things, and when her health returned to the point where she was able to go back to school, it was a huge deal.”

Bethke said he has had students with a personal connection to their research topic but not quite as personal as Willis.

“I never had a student as motivated as Jenny and as committed to doing the research,” he said. “In many ways, Jenny has been exceptional in that regard: her workload as a mother, a dance teacher, a student and a researcher. It wears people out, and she has a tremendous energy to see it all through in a very distinguished way.”

Clyde said he's never known his wife to quit on anything.

“When she puts her mind to something, she's going to do it and there's no way to stop or re-direct her,” he said.

Today, the family lives in Saltsburg and raises farm animals — chickens for the farm-fresh eggs Jenny eats every morning for breakfast — “There's something about the yolks that really helps,” she said — and goats for the as-yet-unknown benefits their milk seems to provide.

Willis is working with Bethke to have her research peer-reviewed and published in a science journal. But her work isn't done yet. She is looking to continue her education at Indiana University of Pennsylvania.

“Now that we know a possible cause for the demyelination, I think we need to study the signal pathway because I think it's possible to develop a medicine that can help,” she said.

Patrick Varine is a Tribune-Review staff writer. Reach him at 724-850-2862, pvarine@tribweb.com or via Twitter @MurrysvilleStar.

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