Doctors Misdiagnosed Me Twice. I Have a Rare Disorder That Primarily Affects Women
By Aryelle Siclait
Published on April 20, 2026.
Sarah Carroll, a 32-year-old attorney from Virginia, was diagnosed with a rare disease that primarily affects women, idiopathic subglottic stenosis, or iSGS. The condition narrows the airway, causing a whistling sound when you breathe or shortness of breath. Despite initially believing she had asthma, she sought another doctor's opinion and was told she had vocal cord dysfunction. A CT scan revealed that thick, rigid scar tissue had invaded her airway. A deeper scope revealed that she had less than 5 millimeters of breathing space in her trachea. By 2022, Carroll had undergone five dilation surgeries and numerous steroid injections to reduce inflammation.
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