New #airwaystenosis paper out 🎉 1,200+ patients • patient-partnered research • strong Northwestern European ancestry signal → supports genetic contribution to iSGS. 🔗 doi.org/10.1002/lio2... #iSGS #RareDisease

Please share this far and wide - you just never know when someone might spot this and think 'Yes, that's me!' and finally seek help from the right people. #rarediseasemonth #notalwaysasthma #asthma #misdiagnosis #airwaystenosis

Spirometry can hold early clues to subglottic stenosis - but only if we know what to look for. Early in my iSGS journey, a senior pulmonologist looked at this chart & attributed my symptoms to anxiety. It took another year before he looked below my vocal cords & identified a 70% stenosis.

In the Living with iSGS community, clinician referral has been the top source of new patient engagement for two consecutive months, accounting for ~33% of all join requests. This reflects growing clinical awareness of iSGS & the value of connecting patients with vetted peer support. #airwaystenosis

When you have a condition you can barely pronounce yourself, it helps to have a simple way to explain it! #airwaystenosis #isgs #idiopathicsubglotticstenosis

The larynx, or voicebox, consists of the supraglottis, glottis, and subglottis. The subglottis, encircled by cartilage, leads into the trachea and is the narrowest airway part, measuring 12-20 mm in adults. A reduced diameter, called subglottic stenosis, can obstruct the airway.

Of 1,142 members who joined Living with iSGS in 2025, >20% were referred directly by their Dr or medical professional - and in October, it reached 33%. This provides #airwaystenosis patients with practical advice, lived experience & psychosocial support alongside clinical care.

Living with #iSGS has welcomed 1,020 new members so far this year, most referred by clinicians/medical professionals. Social platforms also play a big role - together highlighting the importance of clinical signposting and accessible peer support in improving the #airwaystenosis patient journey.

The Living with iSGS group turns 16 this year! So proud of what we have achieved together #airwaystenosis #isgs #breathe