New book launched for children and families living with rare kidney disease Written by Libby Thomas
This world book day the LifeArc-Kidney Research UK Centre for Rare Kidney Diseases have launched their new children’s book, See Me.
See Me tells the story of a child living with a rare kidney condition, telling some of the everyday challenges associated with an illness that are not always visible to others. Through a rhyming storyline, the book explains the daily impact of living with a rare kidney disease. This includes the many hospital visits and medications, the impact of extreme tiredness, missing social activities and following strict dietary restrictions for a child.
The book also introduces clinical research to children in a way they can understand, supported by a glossary with key definitions and a word search! The story highlights the role of healthcare professionals, family support and scientific research in the management and treatment of rare kidney disease.
The central theme of the story is the idea of being seen. Often those with rare kidney diseases can appear well from the outside, despite dealing with significant challenges internally. The story progresses from feelings of loneliness and misunderstanding to empowerment through participation in research and increased awareness among peers.
What could this book mean for children living with a rare kidney disease and their families?
The purpose of the book is both educational and emotional. It aims to raise awareness of rare kidney disease among children, families, teachers, and peers, whilst also validating the experiences of young patients who may not feel seen. It encourages kindness, understanding and open communication, all while highlighting the importance of research to improve future care. By presenting research as hopeful and empowering it aims to encourage children and young people to engage with research.
How the book was created
The LifeArc-Kidney Research UK Centre for Rare Kidney Diseases team worked alongside Alex Winstanley, an experienced writer who engages and educates children and young people on of long-term health conditions. The Centre team spoke with healthcare professionals, parents, and patients to develop a storyline with Alex that reflected real life experiences.
The book is available to buy on Amazon.
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