Living with iSGS

Catherine lives with rare disease, idiopathic subglottic stenosis. This is the development of scar tissue in the area just below her vocal cords, closing her airway with no known cause. This causes shortness of breath and fatigue, with surgery the primary treatment. In the 16 years since her diagnosis, she has had more than 29 general anaesthetics and operations to re-open her airway.

In 2009, Catherine set up what has now become the world’s largest support group for this condition – Living With Idiopathic Subglottic Stenosis. She talks at conferences around the world and is involved in helping doctors with medical studies aimed at helping patients with this disease.

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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!