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Hydrocephalus awareness: How one Eau Claire woman is using her story to help others

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EAU CLAIRE (WQOW) -- A proclamation from the Governor is helping raise awareness about an often misdiagnosed condition that affects around one million Americans.

Governor Evers proclaimed Wednesday as Hydrocephalus Awareness Day in Wisconsin, and one Eau Claire woman is an advocate for awareness after almost losing her ability to live independently due to it.

"My main exercise activity at that point was falling and getting back up," Dorothy Sorlie said. "I was very slowly but surely moving backward. I couldn't walk as well. Then urinary incontinence started, which is a really awful situation to be in. I feel I know what early-stage dementia feels like."

With her symptoms progressing so much over three years, she was eventually wheelchair-bound. Despite this, she and her husband Jim never gave up their search for answers.

"We went to Northwestern Alabama to Native American healing. We had a wonderful experience and learned a lot. [We went to] Diagnostic Chiropractic in Michigan, Eastern, natural. You name it. Rochester. Nobody came up with it."

Her local doctor was by her side the whole time, eventually sending her to an area neurosurgeon who told her they needed to think more "globally" when it came to reaching a diagnosis. That is when a simple CT scan changed her life.

"[I] had a call by the time I got home and said 'we got it, we can fix it,'" Sorlie said.

Her diagnosis: Normal pressure hydrocephalus.

It happens when there is too much spinal fluid in the brain's ventricles. To treat it, a surgeon put a shunt into Sorlie's brain.

"I have tubes all the way down to my tummy. No medication. This is the situation. Is it a cure? No. It simply drains the fluid out of the ventricles," she explained.

Though recovery lasted a few weeks, the shunt brought Sorlie back to life.

"I'd either be dead or in a nursing home because my poor dear Jim couldn't have continued. It wouldn't have been possible," she said.

Sorlie does presentations at local senior centers and makes a point to talk about hydrocephalus with the people she meets to continue promoting awareness.

"I'm in contact with a lot of people or hear from them that doctors simply don't want to discuss it. You are old, you know? That's the way it is. It's an easy diagnosis. A simple CT, how long does that take?" she said.

The condition also impacts infants. With one out of every 770 babies developing hydrocephalus, it is as common as down’s syndrome. There is no way to prevent it and the only known treatment requires brain surgery.

For more information on hydrocephalus, visit www.hydroassoc.org.

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Stephanie Rodriguez

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