The story of Ann
At age 40 I began to train to run a half marathon. Before I reached my goal I was coughing all the time, misdiagnosed with sinus issues that resulted in a surgery that didn’t fix anything, misdiagnosed with allergies but no meds helped, told I didn’t have asthma but then when things got worse told I did have asthma, sort of, mostly put on inhaled steroids which finally allowed me to sleep. Fast forward to age 50, could hardly walk up stairs, could no longer exercise, quality of life getting worse. More tests, more “nothing wrong here”, you are just out of shape – exercise more, more frustration and now coughing is back. Doctors baffled until I reached the point where routine pulmonary test indicated blockage in my trachea. Finally, pointing in the right direction to find out that I had idiopathic subglottic stenosis – my trachea had grown closed with scar tissue, no known cause as most of us are, and by the time I had the first surgery, I was 75% closed, basically breathing through a soda straw. Now three surgeries later, still breathing well and hope I’m one of the ones that this will just go away some day. For those of you with breathing problems, the only way to find this disease is to have someone look down your trachea and see it, there are no other tests. Don’t believe them when they say you’re just unfit, you aren’t, don’t give up trying to find out why you can’t breath.
Go to this website and find information that may help you. It is a support group for people like me and it has a wealth of information on it. www.facebook.com/groups/idiopathicsubglotticstenosis
Best wishes to all of you who are rare!