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Chicago neuroscientist helps woman with no sense of touch learn more about condition

Chicago neuroscientist helps woman with no sense of touch learn more about condition
Chicago neuroscientist helps woman with no sense of touch learn more about condition 02:42

CHICAGO (CBS) –She's the only living person in the world that has no sense of touch, pain or temperature. Kim Stenger is taking part in experiments at the University of Chicago with a neuroscientist determined to help Stenger, and the world, understand her condition.

She spoke to CBS 2's Suzanne Le Mignot exclusively in her first television interview.

Stenger, from Cleveland, Ohio, has a condition called complete sensory neuropathy.

"I've always kind of been on a journey to understand myself because my disability is so rare," she said.

University of Chicago neuroscientist Peggy Mason has been on that journey with Stenger. The pair met in 2014.

Since 2017, Mason has been doing experiments with Stenger to uncover the cause of her condition.

"My life is arguably organized around Kim," Mason said. "I remember it started when I would be laying in bed and one of my cats would jump up and I would think, 'She couldn't detect that.'"

Stenger was diagnosed with the condition at birth. Doctors thought she would be in a vegetative state. She proved everyone wrong.

"I have my JD, my law degree, and I currently work at our county prosecutor's office," Stenger said. "I do criminal law research and writing.

"I had to work hard to prove my true worth, my value."

Stenger and Mason have developed in incredible bond, so much so, that Stenger said next to her family, her relationship with Mason, is the most meaningful in her life.

"She's helped find answers to questions I have had for more than 40 years," said Stenger.

Stenger has taken part in a number of experiments at the Institute for Translational Medicine at the University of Chicago. Among those experiments, was one that really surprised Stenger and the neuroscientist doing the research. It involved putting electrodes on Stenger's arms.

"She feels something and there's a gross localization. She doesn't have this in her legs," Mason said. "We tried her legs. She feels nothing in her legs."

Stenger said if she had a choice, she wouldn't change one thing about her life. She said her condition has allowed her to thrive and achieve all she has today.

The Institute for Translational Medicine is doing a documentary about Stenger's life and the research being carried out at the University of Chicago. You can watch a trailer for the documentary that is still in progress.

Anyone who would like to follow Stenger's journey or donate to support the documentary production can visit the institute's website, chicagoitm.org/documentary. Stenger also keeps updates on her journey on the website.

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