Abstract

Through their personal experience of having intrahepatic cholestasis of pregnancy (ICP), this paper covers the development of current understanding of ICP. It summarises how research and clinical practice was developed through clinicians and followed by the inception of an ICP research group in the 1990s. This group's work has led to a better understanding of the mechanisms behind ICP, the risk threshold for stillbirth, and a genomic understanding of the condition. It focuses on how collaborative work between the author and researchers led to the formation of a charity for ICP. Despite this, some obstetric healthcare professionals continue to provide misinformation about ICP to women and birthing people. Furthermore, the views of those affected by ICP, together with the research they present to clinicians, are being ignored. It highlights a need for those managing ICP to listen to their patients and to pay closer attention to the research being published.

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