To mark this year’s World Book Day, the Life-Arc Kidney Research UK Centre for Rare Kidney Diseases, led by Dr Louise Oni from the Department of Women’s and Children’s Health, launched their new children’s book, See Me. Libby Thomas from Life-Arc explains how the book was created and the ways – both educationally and emotionally - it could help children and families living with rare kidney disease.
See Me tells the story of Sam, a child living with a rare kidney condition. This rhyming picture book reveals the daily impact of living with a rare kidney disease, including challenges that are not always visible to others. This includes the many hospital visits and medications, the impact of extreme tiredness, missing social activities and following strict dietary restrictions for a child.
To create this book, 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 long-term health conditions. The Centre team also spoke with healthcare professionals, parents, and patients to develop a storyline with Alex that reflected real-life experiences.
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 being seen. Often, those with rare kidney diseases can appear well from the outside, despite dealing with significant challenges inside. The story progresses from feelings of loneliness and misunderstanding to empowerment through participation in research and increased awareness among peers.
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.