The story of Catherine
I’ve just had my 28th operation, which for most people is quite a few, but among my peers with idiopathic subglottic stenosis, it is fairly common. Very few doctors – even those dealing with breathing, thoracic surgeons, ENTs and lung specialists – have ever heard of iSGS let alone met someone with it. We tend to get diagnosed with asthma, as we complain about finding it hard to breathe, and have a stridor, a sound that is similar to a wheeze. The difference between our wheeze and an asthma wheeze is when it occurs. With asthma, the wheeze is worse when breathing out, as the air gets trapped in the lungs. As our issue is not in the lungs, rather in the subglottic airway (just below the vocal cords), our ‘wheeze’ or stridor is most prominent when breathing in. Scar tissue builds up below the vocal cords, making the airway narrow, and it hard to get air in the lungs in the first place.
There is help though, via a fabulous support group with more than 3200 members worldwide – the iSGS family – find ‘Living with idiopathic subglottic stenosis’ on Facebook via www.facebook.com/groups/idiopathicsubglotticstenosis – if you think this sounds like you, we’d love to ‘meet’ you, share information, help you take part in research and even provide information to help you educate your friends, family and even doctor if need be. We look forward to seeing you there!