Article: Adult Quality of Life with CAH

A new study published in Endocrine Connections explores the lived experiences of adults with congenital adrenal hyperplasia (CAH) and the wide-ranging impact the condition can have on quality of life. Through in-depth interviews with adults living with CAH as well as family members, researchers identified significant physical, psychological and social challenges that are often overlooked in routine care and existing quality-of-life assessments.
The study highlights issues including trauma linked to early medical interventions, poor body image and self-esteem, difficulties with relationships and sexual wellbeing, concerns around fertility, and the long-term emotional impact of living with a complex lifelong condition.
The authors conclude that more comprehensive, patient-centred approaches are needed to better support adults with CAH and improve future care and outcomes.
Read the full study here.
(Summary and title image generated using AI)
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