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From Patient to Advocate:
A Young Adult Strikes Back at Guillain-Barré

Tracy Opel is no stranger to hard work. At 25 years old, she was working 50 hours per week. In her spare time, she stayed fit by exercising at the gym. She had no idea that, in the course of a few weeks, she would be working even harder—to fight for her life.


It was at the gym, in August 2013, that Tracy first experienced some discomfort. She tried to use a foam roller to alleviate her soreness, but it didn’t work. As she was about to descend the staircase, she felt much weaker than her workout should have made her. “I told my friend I couldn’t walk,” she recalls. She had ignored the numbness in her feet two days before, and in her tongue the next day, chalking them up to too much dancing and hot food. However, after a few days of severe neck pain in September, her mom convinced her to get an MRI. Tracy was sure it was nothing more than a pinched nerve.

 

When the MRI came back negative, Tracy’s neurologist conducted a spinal tap to rule out something more serious. “He told me something wasn’t right,” she says. The results came back with a diagnosis of Guillain-Barré Syndrome (GBS), and she was admitted as an inpatient to the hospital.

“GBS is an autoimmune disease that affects the myelin sheath of certain nerves. It can cause severe muscle weakness and pain throughout the body,” says Dr. Devara, Medical Director of Marianjoy’s Subacute Program. In Tracy’s case, the GBS progressed quickly, rendering her unable to walk for the first couple of weeks. Four plasma treatments and in October, along with medications, helped reduce the severity and duration of the Guillain-Barré episode, but both were taxing on Tracy’s system—and sometimes, left her feeling even weaker.

 

Though she was scared, Tracy’s determination never flagged. “I never even considered the possibility I might never walk again,” she recalls. “I just knew I didn’t want to stay in the hospital. This was my life, and I wanted to fight to get it back.” Tracy needed to rebuild her strength, and her doctor recommended physical therapy at Marianjoy for the next step. “That was the biggest turning point in the whole experience,” she says. “As soon as I got to Marianjoy, I recovered rapidly.”

 

Tracy credits her therapy at Marianjoy for her improvement, and her determination and hard work helped her thrive in the program. She also credits her parents, three siblings, and many friends for their immense support, both for their encouragement and frequent visits. “They were my secret weapon,” she says. “No one can go through trauma without support.”

 

In just three months, Tracy has made remarkable progress, and she continues to strive to come back all the way. She’s walking, working part-time—and spending more time with friends and family. “It changed me for the better,” Tracy reflects. “It taught me to slow down and enjoy life.” Tracy hasn’t lost her drive to succeed—she’s just learned to appreciate the people and special moments in her life even more.

 

Tracy wants to combine her background of fundraising with her passion for advocacy to make a difference. “I want to promote research for GBS; there are still too many unknowns regarding this condition. I don’t want anyone to have to go through something like this,” she says. Kathy Andeway, Tracy’s physical therapist, says that Tracy is a role model for anyone going through a challenge. “Not only has she worked hard to improve her situation, she also wants to use it to help other people,” she says.

 

When asked if she has advice for other patients, Tracy says, “You can’t change the situation; there is no blame game in life. But you can control your choices of what you do in those situations.” As for one of those choices, she says, “Go to Marianjoy if you need rehabilitation. You’ll get better faster.”