April 15, 2024

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Doctors didn't think much of her cough.  A nurse did and changed her life: NPR

Doctors didn't think much of her cough. A nurse did and changed her life: NPR

Julie Silverman had a very rare condition that went undiagnosed for years.

Julie Silverman


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Julie Silverman

Julie Silverman had a very rare condition that went undiagnosed for years.

Julie Silverman

This story is part of the My Unsung Hero series, from the Hidden Brain team. It features stories of people whose kindness left a lasting impression on another person.

In 2018, Julie Silverman developed a bad cough. She went to her primary care doctor, who sent her to a slew of other doctors, but no one could diagnose the source of the cough, or figure out a way to treat it.

Over the next few years, the cough got worse and worse. Silverman went to her weekly appointments to get allergy shots, where she met a nurse practitioner named Allison.

“She was confused by this cough and would often ask me how I was doing,” Silverman recalls. “I was, at this point, kind of dismissive, because I'd been dismissed by so many doctors saying, 'There's nothing wrong, you're not responding to our treatments, we'll try something else.'”

But Alison's response was different, and she watched Silverman. When Silverman came in for one of her weekly appointments, Alison noticed that her condition had worsened.

“My voice sounded much worse. Very hoarse voice, extreme shortness of breath, wheezing, along with coughing, and she was adamant that something was wrong with my airway,” Silverman said.

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Allison enlisted the help of one of the doctors at the clinic and insisted on performing a bronchoscopy on Silverman. The procedure involved placing a small camera through her nose and down her throat to see if there were any blockages. When the procedure was over, Silverman could tell they had found something.

“I could tell just by their faces that something wasn't right,” she said.

The endoscopy showed that Silverman had a condition called idiopathic subglottic stenosis. Essentially, scar tissue formed at the top of her windpipe. Her airway was 75% blocked, meaning she was essentially breathing through the width of a straw.

“This is an extremely rare condition. It occurs in only one in every 400,000 people,” Silverman said. “And then [it is] “Very dangerous and fatal if not treated because your airway completely closes off.”

The diagnosis gave Silverman the information she needed to find a specialist who could properly treat her. She now spends her time volunteering at the local hospital, riding her bike, hiking, skiing and spending time with family and friends. She often thinks of Alison while doing things that bring her happiness.

“If Alison had not recognized the fact that she was sure something else was wrong and had asked this doctor to look at my throat, I don't know what would have happened,” she said. “It was her persistence, diligence, listening to me and taking me seriously that led to my condition being diagnosed in time enough to do something about it. For these reasons, Alison became my unsung hero.”

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My Unsung Hero is also a podcast – New episodes are released every Tuesday. To share your unsung hero's story with the Hidden Brain team, record a voice memo on your phone and send it to [email protected].