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‘No One Is Talking About This’ – rare diseases in childhood
  1. Temitope Fisayo
  1. Queen Mary University of London Blizard Institute, London, UK
  1. Correspondence to Dr Temitope Fisayo, Queen Mary University of London Blizard Institute, London E1 2AT, UK; temitope.fisayo2{at}nhs.net

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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 The disease comprises many features, chief among them somatic overgrowth that may occur in a variety of tissues. Rare diseases are a global public health priority of growing importance. They disproportionately affect children, and the majority are genetic in nature. Collectively, rare diseases affect about 3.5 million people in the UK.3 While each condition varies by its severity or its associated complications, parents to children with rare genetic disorders face many of the same problems and have similar unmet needs.4

No One Is Talking About This recounts a journey towards diagnosis—and life after diagnosis—for children with rare diseases. The novel illustrates the use of internet-based communities …

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Footnotes

  • Contributors TF wrote the article.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.