Who gets ISGS?

Idiopathic subglottic stenosis is exceedingly rare – less than one in 400,000 people get this disease (the definition of ‘rare’) – it is in fact estimated to only impact one person in half a million per year.

 

If you are female, then you are one of many, as this affects 98% females. If you are male, then you are truly special and part of the 2%.

 

Many have not yet been diagnosed – as you will likely have found yourself, doctors often tell patients they have asthma or bronchitis, more common conditions. The big message doctors need to get is that with asthma, the wheezing sound is heard when breathing out, with a tracheal/upper airway blockage (rather than a lung) issue, the wheezing sound is also heard when breathing in.

 

People are often afraid of passing this on to their children – that is very unlikely. Just 3% of SGS patients have a blood relative with this disease, suggesting this is not something you should be too worried about. If a relative (particularly a female) has similar symptoms to you, then they should suggest this as a diagnosis to their doctor and ensure they get sent to an ENT for investigation.