'No One Is Talking About This - rare diseases in childhood

Patricia Lockwood’s 2021 novel, No One Is Talking About This, demonstrates the challenge of rare diseases in childhood through its account of a family whose baby is diagnosed with Proteus syndrome.1 Set in the USA, the book is divided into two distinct halves. The first concentrates on the social media obsession of the unnamed protagonist (the child’s aunt); in the second, the narrative focuses on the baby’s diagnosis. No One Is Talking About This is autofictional—Lockwood dedicates the book to her niece, who lived for 6 months with Proteus syndrome. Fiction can help illustrate the experiences of parents and caregivers to children living with rare diseases. Paediatricians and other child health professionals can gain useful insights about families’ experiences of childhood rare diseases and life-limiting disease from the novel. Proteus syndrome is a rare, sporadic, genetic disease caused by mosaic mutations of the AKT1 gene.2...
Source: Archives of Disease in Childhood - Category: Pediatrics Authors: Tags: Voices from literature Source Type: research