Multiple sclerosis advocate shares her story to raise awareness

Chicago Proud
CHICAGO (WLS) -- Nearly 1 million people in the U.S. are living with multiple sclerosis according to a new study by the National MS Society.


This startling number is the reason why so many people plan to pound the pavement for Walk MS Chicago this weekend.

"I am the girl with MS, so I'm totally fine with that because it's who I am. So the girl with MS is totally fine," said Justine Fedak.

Fedak was diagnosed with multiple sclerosis 18 years ago, just three months after getting married. It took time for her to become the confident outspoken advocate you see today.

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"I actually refused treatment and I'm not sure, for 10 years I thought I could beat this on my own, maybe this isn't true. So I think there was a bit of denial for me," she said.

Fedak came to terms with her diagnosis and decided to share her journey instead of hiding from it, using her story as a way to help others.


"When people say that I'm an advocate, it makes me feel powerful," Fedak said. "There are things that I need to do for myself that make me feel in control of my MS, the disease I often describe as being random and somewhat ridiculous. You just don't know what's going to happen to you."

Speaking across the Chicago area and encouraging others, all while still receiving treatment at Northwestern Medicine and using infusion technology to keep the disease at bay and continue her life as an executive, wife, mother and advocate.


"Doing that all while living with MS is pretty spectacular and I think that's what she embodies is that you can do this even while living with an MS diagnosis," said Sarah Rodriguez, president of the Greater Illinois Chapter of the National MS Society.

"Justine is person who has a great deal of resilience and who is able to live with MS very well because of her ability to not only ability to continue her activities, but also to embrace the effort to try to help other people to learn to live with MS and be an example to other people, "said Dr. Bruce Cohen, director of Northwestern's Comprehensive MS Program.

This weekend, Fedak will be front and center at the MS walk to celebrate her health and encourage others to fight on.

"So I do think that at times the MS has helped me to be more focused on what's more important in my life and I definitely live every day to the fullest and I have a motto: be in love with your life every single minute," Fedak said. "And for me that's how I live every day with MS."

Fedak will be walking with her doctors at Northwestern Medicine on Sunday, April 28 for Walk MS Chicago at Soldier Field. The walk steps off at 11:00 a.m.

ADDITIONAL INFORMATION:
MS Prevalence Study press release
2019 Walk MS Chicago press release
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