South Bend woman on a mission to spread the word about rare disorder

SOUTH BEND, Ind. -- A rare neurological disorder causes muscles to freeze up and affects more than 250,000 children and adults nationwide.

It changes the way people walk and talk and there is no cure.

While it's a disease that knows no boundaries, even striking the rich and famous, a South Bend woman wanted to share her story in the hopes others won't have to wait as long as she did for a diagnosis.

Shania Twain has it and has undergone therapy to keep singing. Country great Mel Tillis is a stutterer which is also linked to a condition known as dystonia.

Libby Karns, 68, may not have their fame but she still spreads the word about this mysterious condition that affects her entire body.

“It affects almost everything,” she said.

Libby was hit by a car when she was eight and suffered from epilepsy. She has also suffered a number of strokes.

Dystonia affects many parts of her body, including her voice and it took a doctor in Indianapolis, at the age of 47 to make her diagnosis.

“I was diagnosed with three kinds,” Libby added.

Always courageous since her 1994 diagnosis, Libby has had surgery and gets botox injections into her throat which temporarily makes speaking easier, but like Shania Twain and Mel Tillis, the dystonia does not affect her ability to sing.

She is part of the choir at the Sanctuary at St Paul’s where she has lived for seven years and the difference between her ability to speak and sing is amazing.

She is also a member of the bell choir.

Director Cindy Robinett says Libby is an inspiration to all.

“She's just inspiring to be around,” Cindy said, “she's a very loving, kind person.”

And through that positive attitude she has penned two books dealing with dystonia. Her latest is “A Butterfly's Metamorphosis: Life Story of Libby Karns.”

Libby says she is passionate about letting people know what dystonia is and that it doesn't affect her mind.

September is Dystonia Awareness Month which is another reason Libby wanted to share her story.

If you'd like to learn more about the disorder we have a link to their research foundation on our website, just click here.

And if you're interested in reading Libby's life story, check it out here on Amazon.


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