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MG Superwoman, Taking It One Day at a Time

MG Superwoman, Taking It One Day at a Time

By Kate Stober

Receiving a myasthenia gravis diagnosis can be frightening and upsetting. It’s never easy to get bad news, especially about your health. But for Paula McGinnis, having MG and other autoimmune disorders has helped her grow in ways she never imagined.

 

“I’ve learned to cope with the disease with a positive attitude,” she said. “I truly know what it means now to smell the roses, like my grandma always told me, and live life one day at a time.”

 

Paula was a neurology nurse when she first developed generalized weakness and muscle issues. She could recognize that her symptoms needed attention. After tests and question marks about the cause of her symptoms, she developed eye weakness that eventually led to an inability to open her eyes. She was diagnosed with MG in 2006.

 

It was an insurance claim denial in 2014 that spurred Paula into advocacy. She became active with MGFA and was asked to be part of a panel discussion at the MGFA National Conference. This opportunity “opened up my life,” Paula said. “I decided it was time to become the voice of MG for all us that walk the shoes of MG, and bring awareness to our region.”

 

Paula lives in Metropolis, Illinois, a small town with a towering Superman statue in front of the county courthouse. She decided to organize a local walk to raise awareness and funds for MG. The first walk was held in November 2014, with 70 people from southern Illinois, Missouri and western Kentucky. They walked just a few blocks, from the statue of Lois Lane to Superman, to make the event accessible for those with MG, who tire easily.

 

Since then, she’s coordinated the annual walk in Metropolis. She started a Facebook page - MG Southern IL Region - which serves as a hub for the region’s MG advocacy and awareness activities.

 

“I was really shy when I was younger. Having myasthenia and stepping out of my comfort zone really opened me up — I take my myasthenia advocacy with me wherever I go.”

A few years after organizing her first walk, Paula took her advocacy 4,000 miles west to Kauai, Hawaii. Paula and her husband Gary had been to the island many times when a local friend suggested coordinating a walk in Kapaa, on Kauai’s east side. They garnered city support, started another Facebook page, promoted the event in the local media, and welcomed about 80 participants in February 2017. 

 

“I heard from someone at the walk who said, ‘I thought I was all alone in this disease.’ There were many people who came who didn’t know anything about myasthenia.”

 

In the future, Paula hopes to see a walk on every island.

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