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 someone else.
In 2018, Julie Silverman developed a bad cough. She went to her primary care physician, who sent her to a plethora 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 was going to weekly appointments for allergy shots, which is where she met a nurse practitioner named Alison.
“She was really kind of perplexed by this cough and was often asking me how I was doing,” Silverman remembered. “I had, at this point, gotten kind of dismissive about it, because I had been dismissed by so many doctors as, ‘There’s nothing wrong, you’re not responding to our treatments, we’ll try something else.'”
But Alison’s response was different, and she kept tabs on Silverman. When Silverman came in for one of her weekly appointments, Alison noticed that her condition had worsened.
“I sounded much worse. A very hoarse voice, very breathless, wheezing, along with my coughing, and she was just adamant something was wrong with my airway,” Silverman said.
Alison got one of the physicians in the clinic and insisted he do a scope of Silverman’s trachea. The procedure involved putting 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’d found something.
“I could just tell by their faces, something was not right,” she said.
The scope showed that Silverman had a condition called idiopathic subglottic stenosis. Essentially, scar tissue had formed at the top of her trachea. Her airway was 75% blocked, meaning she was basically breathing through the width of a straw.
“This is a very rare condition. It only happens to about one in 400,000 people,” Silverman said. “And so [it is] very serious and fatal if not treated because your airway completely closes.”
The diagnosis gave Silverman the information she needed to find a specialist who could properly treat her. Now, she spends her time volunteering at her local hospital, riding her bike, hiking, skiing and spending time with family and friends. She often thinks of Alison while doing the things that bring her joy.
“Had Alison not picked up on the fact that she was sure something else was wrong, and gotten this physician to look in my throat, I don’t know what would have happened,” she said. “It was her persistence and diligence and her listening to me and taking me seriously that got my diagnosis in a timely enough fashion to do something about it. So for these reasons, Alison is my unsung hero.”
My Unsung Hero is also a podcast — new episodes are released every Tuesday. To share the story of your unsung hero with the Hidden Brain team, record a voice memo on your phone and send it to myunsunghero@hiddenbrain.org.
This story originally appeared on NPR
