Founder of the global Living with Idiopathic Subglottic Stenosis support group. Researcher & patient advocate with 20+ years lived experience, working alongside ENT, SLT & respiratory specialists worldwide. Based in SW UK.https://bsky.app/profile/sparkysparkler.bsky.socialhttps://bsky.app/profile/sparkysparkler.bsky.social/post/3mkzpkgggxk2pToday is International #AirwayStenosis Day -“May the 4th be with you.” The date is intentionally chosen as a reference to Darth Vader, whose characteristic breathing is often cited as an accessible way to recognise the sound of upper airway obstruction. #AirwayStenosis #iSGS #ENT #Laryngology04 May 2026 12:50 +0000at://did:plc:nft64g2pcs5e455ye7krwj64/app.bsky.feed.post/3mkzpkgggxk2phttps://bsky.app/profile/sparkysparkler.bsky.social/post/3meizh2oojc2wNew #airwaystenosis paper out 🎉 1,200+ patients • patient-partnered research • strong Northwestern European ancestry signal → supports genetic contribution to iSGS. 🔗 https://doi.org/10.1002/lio2.70349 #iSGS #RareDisease10 Feb 2026 13:01 +0000at://did:plc:nft64g2pcs5e455ye7krwj64/app.bsky.feed.post/3meizh2oojc2whttps://bsky.app/profile/sparkysparkler.bsky.social/post/3mdvctqywq22qPlease 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 #airwaystenosis02 Feb 2026 16:56 +0000at://did:plc:nft64g2pcs5e455ye7krwj64/app.bsky.feed.post/3mdvctqywq22qhttps://bsky.app/profile/sparkysparkler.bsky.social/post/3mddk7t4qdc2cSpirometry 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.26 Jan 2026 15:20 +0000at://did:plc:nft64g2pcs5e455ye7krwj64/app.bsky.feed.post/3mddk7t4qdc2chttps://bsky.app/profile/sparkysparkler.bsky.social/post/3m6wc73m3tk2bIn 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. #airwaystenosis01 Dec 2025 11:11 +0000at://did:plc:nft64g2pcs5e455ye7krwj64/app.bsky.feed.post/3m6wc73m3tk2bhttps://bsky.app/profile/sparkysparkler.bsky.social/post/3m5bxfwnooc2kWhen you have a condition you can barely pronounce yourself, it helps to have a simple way to explain it! #airwaystenosis #isgs #idiopathicsubglotticstenosis10 Nov 2025 15:39 +0000at://did:plc:nft64g2pcs5e455ye7krwj64/app.bsky.feed.post/3m5bxfwnooc2khttps://bsky.app/profile/sparkysparkler.bsky.social/post/3m4vjg3cgfc2vOf 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.05 Nov 2025 16:57 +0000at://did:plc:nft64g2pcs5e455ye7krwj64/app.bsky.feed.post/3m4vjg3cgfc2vhttps://bsky.app/profile/sparkysparkler.bsky.social/post/3m2ck53jlis2jLiving 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.03 Oct 2025 16:59 +0000at://did:plc:nft64g2pcs5e455ye7krwj64/app.bsky.feed.post/3m2ck53jlis2jhttps://bsky.app/profile/sparkysparkler.bsky.social/post/3m2772d4pau2lThe Living with iSGS group turns 16 this year! So proud of what we have achieved together #airwaystenosis #isgs #breathe02 Oct 2025 09:03 +0000at://did:plc:nft64g2pcs5e455ye7krwj64/app.bsky.feed.post/3m2772d4pau2l