Living with iSGS

In December 2004, after struggling to breathe for 18 months, Catherine was diagnosed with a rare disease – Idiopathic Subglottic Stenosis (iSGS). Essentially, this disease has no known cause, and involves scar tissue spontaneously building up in her airway, slowly narrowing the subglottic (just below the vocal cords) area of her trachea. Catherine has had many surgeries to treat this, most commonly dilations (which essentially just open up the scarring temporarily) and also a newer operation called the Maddern, which cut away all the scarring (though this worked, a new stenosis appeared lower down three years later).

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.

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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

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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: idiopathic.subglottic.stenosis@gmail.com

Resources

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