Let's chat about a rare disease that primarily affects women called Idiopathic Subglottic Stenosis
Posted by Melissa Breuer on 30th Sep 2025
Last year I was diagnosed with a rare, chronic disease called Idiopathic Subglottic Stenosis - scar tissue that grows in your airway (trachea) which can end up blocking it if not diagnosed and treated. Unfortunately it is a chronic illness, so it will keep coming back. This disease mainly affects women if it is caused by an unknown reason (idiopathic) and not from being intubated. I would like to spread awareness about Idiopathic Subglottic Stenosis as most women get misdiagnosed 
Here's my story....What started as having to constantly clear my throat when speaking, while pregnant with my fourth child many years ago, ended up causing me to struggle to breathe when walking only a few steps. Last year (2024), I could not walk up the stairs within my home (even slowly) without puffing and gasping for air. This led to anxiety, which of course, made my breathing worse. It was really scary as I was having tests done, seeing specialists, yet no one could diagnose me. This disease often gets misdiagnosed as Asthma, but puffers will not help.
Late last year, I was finally diagnosed by my respiratory physician. I walked into his office and he knew what I had straight away, just from hearing my breathing. Whilst there, I did a Lung Function Test and he sent me for an urgent CT scan, which showed I had a blockage in my airway confirming my diagnosis. A week later I had urgent surgery to cut out the scar tissue. My airway ended up being only 4mm wide. A normal airway is around 13mm wide. Because it was left for so long, the scar tissue was spiralling down my throat, so it was quite long. Since having the surgery, I've been breathing better, but I still cough a lot due to having no cilia where the scar tissue was growing. After the surgery, my surgeon told me I'd be requiring another surgery in 9 months. So far, its been over 10 months and I feel pretty good :) I am hoping to go at least another couple of years, but I am working hard at it by watching what I am eating.
So, to sum it up, if you’re a woman between 30 and 60 and you’re experiencing shortness of breath and sound like Darth Vader (no joke), please don’t fob it off and put it down to just being unfit. Get it checked ASAP and tell your GP about this chronic disease and ask them to refer you to an ENT or respiratory physician. Please don't hesitate to send me a message if you have any questions about this disease or it's symptoms.
Mel x