Living with iSGS

Catherine set up and runs the world’s largest support group for this condition – Living With Idiopathic Subglottic Stenosis. She talks at ENT conferences around the world and is involved in helping doctors with a number of medical studies aimed at helping patients with this disease.

Living with Idiopathic Subglottic Stenosis
Private group · 3,825 members
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The world’s largest support group for patients diagnosed with idiopathic subglottic stenosis, non idiopathic subglottic and tracheal stenosis, their s…


How can I help?

Recent research in the USA found that women from lower socio-demographic backgrounds were extremely underrepresented with this disease, suggesting their symptoms are still not diagnosed correctly. Please download and print the following flyer and take it along with you to your next GP visit – you could help save lives!


Catherine will next be presenting in Vienna, Austria in March 2020:

Catherine’s next presentation to ENT doctors

25-27 September 2019 – British Laryngology Association – Cutting Edge Laryngology Conference (Edinburgh, UK)

Catherine attended the recent laryngology conference in Edinburgh, Scotland. You can find the notes she took for patients here.

Presenting on the iSGS patient experience


22-24 March 2019 – Australian Society of Otolaryngologists, Head and Neck Surgeons 69th Annual Scientific Meeting (Brisbane, Australia)

Catherine presented at the ASOHNS 69th Annual Scientific Meeting in Brisbane Australia and mentioned some valuable resources relevant to treating and learning about idiopathic subglottic stenosis.

Find the full presentation (plus bonus slides) here.

Previous presentations

October 2017 – North American Airway Collaborative Meeting – Chicago, USA

September 2018 – North American Airway Collaborative Meeting – Atlanta, USA

For doctors and airway specialists

If you treat patients with iSGS and would like to be kept up to date with the latest papers and the most recent version of the Rough Guide, please contact Catherine via:


North American Airway Collaborative

Access to all most recent and relevant papers from member organisations on the topic of iSGS

Patient-Centered Outcomes Research Institute

The final report from The Vanderbilt Study – Treatment Alternatives in Adult Rare Disease; Assessment of Options in Idiopathic Subglottic Stenosis

For stenosis patients (doctors also welcome!): Living with Idiopathic Subglottic Stenosis Facebook support group

And a paper analysing the effectiveness and content of the support group can be found here:

Annals of Otology, Rhinology & Laryngology. 128(4):293–299, APRIL 2019 The Online Support Group as a Community: A Thematic Content Analysis of an Online Support Group for Idiopathic Subglottic Stenosis

Idiopathic Subglottic Stenosis – A Rough Guide for Beginners – (Known as ‘The Rough Guide) – booklet for patients, registrars, students helping explain in simple terms all about iSGS, its treatment options and other tips on coping

A retrospective paper on the endoscopic resection technique: Idiopathic Subglottic Stenosis: An Evolving Therapeutic Algorithm, Laryngoscope, 124:498–503, 2014

Findings from cross-centre research from NoAAC members:

Idiopathic Subglottic Stenosis is Associated with Activation of the Inflammatory IL-17A/IL-23 Axis, Laryngoscope, 127:179-185, 2017

Molecular Analysis of Idiopathic Subglottic Stenosis for Mycobacterium Species, Laryngoscope, 127:179-185, 2017

Other relevant papers

April 2019 – Vocal fold fixation due to proximal stenosis progression complicating idiopathic subglottic stenosis – S. A. R. Nouraei  · E. B. Dorman· J. Johnston · D. E. Vokes

Paper looking at the risks involved with the stenosis spreading within the trachea – risks to voice etc