Wisconsin woman is first in the world to try new experimental treatment for autoimmune disease affecting 4 million Americans

 

MADISON, Wis. (CBS 58) -- Most of us take aspects of our everyday lives for granted, like the ability to easily speak or eat.

But for four million Americans with Sjögren's syndrome -- a disease that causes chronic dryness -- even something like swallowing can be a challenge.

Now, an expert at the University of Wisconsin Health in Madison is running one of the country's only Sjögren's research clinics -- and a Madison woman is the first person in the world to try out a new therapy designed to make a difference.

"You're just throwing the dart at the dartboard, trying to figure out what this is," said Julianne McGowan, who was diagnosed in 2017.

It took years of trial and error and visiting dozens of doctors, all of whom couldn't give McGowan an answer for why she was experiencing symptoms like dry eye, dry mouth, fatigue, and muscle ache.

"I had so much pain in my muscles, in my joints, they thought I had a hairline fracture," McGowan told CBS 58's Ellie Nakamoto-White.

However, it was one day in 2017 when she was on YouTube and saw a video featuring UW Health expert Dr. Sara McCoy, who was discussing Sjögren's and encouraging affected people to reach out.

"Within 24 hours, I had an appointment three months later," McGowan recalled. "Sjögren's is not widely known, and people don't know how to say it, they don't know how to spell it. They don't understand how it can impact a person."

Besides the dryness, the complex disease also impacts digestion, organs, and dental health. While it's not considered fatal in and of itself, it can lead to things like lymphoma cancer.

"You know, there's so many different aspects of the body that can go wrong. You can't find one treatment to cover all of it," McGowan said.

However, UW Health is now experimenting with cell therapy injections, and McGowan is patient one.

She received her first dose last December and was told it might take up to 30 days to notice any difference.

"It was about 10, 11 days later, I was in my kitchen preparing a meal, and I thought, what is in the bottom of my mouth!" McGowan recalled. "I got so excited. I'm like, it's working! I have saliva!"

McGowan added that she even moved back four hours from the Twin Cities to Madison so she could easily participate.

Now she's hoping that the trial will inspire others to not give up, no matter how long it takes.

"I just want others in the Sjögren's community to know help is on the way," McGowan said.

The goal of the trial's first phase is to show that the therapy is safe. Over the next two years, UW Health will track each participant's results.