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Julie Silverman suffered from a very rare disease that went undiagnosed for years.
Julia Silverman
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Julia Silverman
Julie Silverman suffered from a very rare disease that went undiagnosed for years.
Julia Silverman
This story is part of the My Unsung Hero series, from the Hidden Brain team. 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 many other doctors, but none of them could diagnose the source of the cough or find a way to treat it.
Over the next few years, the cough became increasingly worse. Silverman went to weekly appointments to receive allergy shots, and it was there that he met a nurse practitioner named Alison.
“She was really a little perplexed by this cough and often asked me how I was doing,” Silverman recalled. “At the time I had been a little dismissive about it, because a lot of doctors had dismissed me by saying, ‘It’s okay, you’re not responding to our treatments, we’ll try something else.'”
But Alison’s response was different and she kept an eye on Silverman. When Silverman came to one of her weekly appointments, Alison noticed that her condition had worsened.
“It sounded much worse to me. A very hoarse voice, very breathless, wheezing, along with my cough, and she was convinced something was wrong with my airway,” Silverman said.
Alison called one of the doctors at the clinic and insisted that he do a scan of Silverman’s windpipe. The procedure involved putting a small camera up his nose and down his throat to see if there were any blockages. When the procedure was over, Silverman realized they had found something.
“I could tell by their faces that something wasn’t right,” he said.
The scope showed that Silverman had a condition called idiopathic subglottic stenosis. Basically, scar tissue had formed on the top of the trachea. His airway was 75% blocked, meaning he was basically breathing through the width of a straw.
“This is a very rare condition. It only occurs in about one in 400,000 people,” Silverman said. “And that’s why it’s very serious and fatal if it’s not treated because the airways close completely.”
The diagnosis gave Silverman the information she needed to find a specialist who could properly treat her. Now, she spends her time volunteering at the local hospital, biking, hiking, skiing, and spending time with family and friends. She often thinks about Alison while she does the things that make her happy.
“If Alison hadn’t picked up on the fact that I was sure something else was wrong and had asked this doctor to examine my throat, I don’t know what would have happened,” she said. “It was her persistence and diligence and the fact that she listened to me and took me seriously that got me diagnosed at the right time to do something about it. For these reasons, Alison is my unsung hero.”
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 note on your phone and send it to myunsunghero@hiddenbrain.org.