References
Idiopathic subglottic stenosis ‘at a glance’
Abstract
Idiopathic subglottic stenosis is a narrowing of the air way which affects mainly women of European descent between the ages of 30-50, with the cause still a mystery. This article explains what nurses need to know about this rare condition.
Idiopathic subglottic stenosis (ISGS) is a rare condition of unknown aetiology that primarily affects women of European descent in their third to fifth decade of life. The signs and symptoms are often insidious, leading individuals to seek healthcare only when their quality of life is significantly affected. Patients with ISGS often experience lengthy (mis)diagnosis journeys, and there is no known cure. Current treatment regimens aim to reduce symptom burden and prolong intervals between procedures due to the high recurrence rate of stenosis. Nurses play a pivotal role in educating patients about rare diseases, helping them understand their condition and providing skills for self-monitoring.
People with rare diseases encounter common problems in their patient journey, such as delayed or inaccurate diagnosis, consulting multiple healthcare practitioners, difficulty finding experienced practitioners to treat the condition, poor information provision, minimal research on the condition, and lack of a person-centred approach. These issues affect clinical decision-making and access to appropriate health and social care (Garrino et al, 2015; Molster et al, 2016; NORD, 2019; Quintal et al, 2023; Rare Diseases International, 2024).
Subglottic stenosis (SGS) is a rare disease is described as a narrowing of the airway below the vocal cords (NORD, 2018). Anderson (2024) explains the four causes of this condition: congenital, autoimmune, trauma, and idiopathic. This article focuses on idiopathic subglottic stenosis (ISGS), a rare condition of unknown cause (National Cancer Institute, 2024).
Idiopathic subglottic stenosis affects mainly women of European descent between the ages of 30-50, with an incidence of approximately 1:400,000. Despite treatment, there is a high rate of recurrence (Carpenter et al, 2018; Aravena et al, 2020; Lu et al, 2023).
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