Persistence and self-advocacy are key qualities when seeking an answer for a rare disease, particularly one such as #iSGS where 96% of diagnosed patients are initially misdiagnosed, often with ‘panic attacks’, ‘anxiety’, ‘overweight’, and ‘unfit’. #RareDiseaseDay2024

Definitely worth a listen - especially if you are an #Laryngologist or #EarNoseThroat doctor #breathe #airwaystenosis

An interesting paper from #laryngologists in Italy, trialling lipoaspirate injections along with dilation in #airwaystenosis patients. From 6-monthly ops to 15-months and beyond. Sounds appealing and hopeful! researchgate.net/publication/37…

Thank you to all the medical professionals treating patients with #airwaystenosis and who recommend the 'Living with idiopathic subglottic stenosis' support community. 17% of new members in March learned about us from you 💙 #wearebreathingbettertogether #breathe #isgs

Two weeks on Friday (May 4) is International Airway Stenosis Awareness Day - please download these resources to share on the day - let's make this the biggest #airwaystenosis day yet! #breathe #darthvaderbreathing

Brilliant idea - this would be great!

Brilliant - thank you for that! 👏

How frequently do people with #iSGS have dilations vs people with #subglotticstenosis from autoimmune disease (eg GPA/vasculitis)? Answer: nearly one in two have an op annually, and one in five every 6 months. No significant difference between the 2 groups. #airwaystenosis

I've just heard the awful news that another #airwaystenosis sister has passed away due to a mucous plug, tragically while in hospital awaiting a dilation op. Please encourage patients to a) nebulise frequently and b) don't delay an op until they are "bad enough" - 50% is enough!

Why should ALL #airwaystenosis patients be encouraged to nebulise with saline regularly? Because it could save their life

Doctors/medical professionals are the third highest influence for new members of the Living with idiopathic subglottic stenosis support community this year #thankyou #airwaystenosis #breathe

May the 4th be with you! Today is International Airway Stenosis Day, when we have a chuckle to raise awareness of a slightly more serious topic. Please share and spread the word! #airwaystenosis #iSGS #breathe

Thank you for this, it is wonderful! #airwaystenosis #DarthVaderBreathing #Maythe4thBeWithYou

Worth tuning in to this #airwaystenosis #breathe

Thank you to all the #laryngology, #ENT #Thoracic, #SLP and #SLT specialists who recommend their airway stenosis to join Living with #iSGS. You are the second highest source of members this year so far Dr Gemma Clunie Chadwan Al Yaghchi Inna Husain, MD Paul Bryson, MD MBA Al Merati 🇺🇸 🎸 RCSLT 💙

Thank you Dr Gemma Clunie for recognising me in this post, it was a pleasure working with you, and I hope we can continue it in the future. Always happy to progress learning in the field of #airwaystenolsis #research #isgs

Another month ticks by and I need to again thank specialists who treat #airwaystenosis patients for referring them to facebook.com/groups/airways… - 13% of new members this year learned from their treating doctor or a member of their team #thankyou #breathe