I know this isn’t travel lated, but I believe this is important information that needs to be shared. I hope this can help at least one woman who is struggling.
Have you ever heard of Idiopathic Subglottic Stenosis? Me either until 5 years ago. Idiopathic subglottic stenosis is very rare. It is estimated to only impact one in every half a million. And who gets Idiopathic Subglottic Stenosis — 98% are women.
One in two patients experience their first symptoms between the ages of 31 and 45, with the highest amount in the 31-40 age bracket.
More than nine in ten have European ancestry.
So what are the symptoms of this condition. You literally sound like Darth Vader when you are walking up the stairs, carrying items for a distance, hills are a nightmare, and eventually taking a shower becomes quite a chore. This noise is called Stridor. Everyone will think you have some sort of heinous illness when in actuality, your trachea right below your vocal chords is closing/swelling for no apparent reason. That is where the term idiopathic comes in. Doctors have yet to discover the cause of women developing this condition. Other symptoms include excessive coughing to try and clear mucus that is blocking your airway.
Now the scary situation about this condition is that most of us are misdiagnosed for months with asthma, bronchitis or panic attacks. You are most likely the first patient with this condition your local doctor has ever met. This means it is up to you to educate them! It took me going through 4 doctors before one of them actually listened to me and realized something was seriously wrong. My trachea was the size of a pencil when I had my very first dilation. I was the first patient he has ever seen with this condition. He was amazing too! He admitted that this condition would be better handled by somebody with more knowledge. He referred me to the Mayo Clinic in Rochester, MN.
Having Idiopathic Subglottic Stenosis is a lifetime condition. Even if you have procedures such a resection to “cut out the bad area”, the stenosis often times does eventually return and you will need further treatment.
Best advice, seek out experienced medical professionals that have ample amounts of knowledge about this condition. You will need to go to a specialist to receive the best chance at a permanent fix.