New Interactive Storybook Educates Children on Rare Kidney Disease Through Adventure
Alexion, AstraZeneca Rare Disease has introduced a new electronic storybook designed to help children living with atypical Haemolytic Uraemic Syndrome (aHUS), a rare kidney disease. The interactive book aims to simplify complex medical concepts and provide emotional and practical support for children affected by this condition. The goal is to make it easier for children to understand their condition while offering a fun and engaging way to learn.
aHUS is a genetic disease that affects an estimated 0.4 to 0.5 people per million and can lead to severe kidney damage and other organ complications. It can impact both children and adults, and managing the disease can be a complex process. The new interactive storybook, “Revealing the Secrets of aHUS,” was developed to help children and their families better understand aHUS, focusing on its medical and emotional aspects in a manner that is both informative and accessible.
The book was created in collaboration with Kidney Care UK and the Newcastle National Renal Complement Therapeutics Centre. It transforms the challenging journey of diagnosis, treatment, and care into an interactive experience for young readers. By combining healthcare education with imaginative play, the storybook aims to make learning about aHUS a more enjoyable experience for children, while empowering them to better manage their condition.
Deborah Richards, General Manager of Alexion, AstraZeneca Rare Disease, emphasized the importance of helping children understand their complex condition: “In the UK, 3.5 million people live with a rare disease, and it’s estimated that 75% of these conditions affect children. At Alexion, we work closely with healthcare providers to support these young patients, helping them understand a condition like aHUS, which can be quite complex. This new resource is one way we can empower children to take control of their disease journey.”
The interactive e-book is designed for children aged 6 to 10 and allows them to become the hero of their own story. By personalizing the main character—choosing their name, appearance, and outfit—children step into the role of the ‘Guardian of Healthoria.’ The mission is to restore a magical land overrun by mischievous pixies. Along the way, readers will battle mythical creatures, solve puzzles, and collect magical artifacts, all while learning about the kidneys, the immune system, and the effects of aHUS on the body and mind.
The book is structured with quests and challenges such as riddles, mazes, and jigsaw puzzles, which encourage children to learn important health information while having fun. At every stage, they collect rewards and receive summaries of what they’ve learned, making complex medical concepts easier to understand and remember. By blending entertainment and education, the storybook makes it easier for children to grasp the science behind aHUS.
Laurie Cuthbert, Director of Fundraising, Marketing and Communications at Kidney Care UK, expressed excitement about the project: “The children and families we support show incredible resilience. Having a rare disease like aHUS can be challenging to both understand and manage, which is why we are thrilled to be part of ‘Revealing the Secrets of aHUS.’ It gives children the chance to identify with a character while learning about their condition, and it creates a space for parents and carers to learn alongside their child.”
The book is available on various platforms, including laptops, tablets, mobile phones, and in print. It focuses on four main areas throughout the story: understanding the patient journey, learning how aHUS affects the kidneys, addressing the emotional aspects of living with the disease, and finding support from healthcare providers and communities.
Christine Maville, Nurse Consultant for aHUS at the Newcastle Hospitals’ National Renal Complement Therapeutics Centre, praised the book for its ability to explain the complexities of aHUS in a way that children can understand: “Navigating a disease is tough for anyone, but it can be especially challenging for children. This book does an excellent job of explaining the complexities of aHUS and provides strategies for coping with the disease. It is a valuable resource that can brighten the lives of children diagnosed with aHUS and remind them they are not alone.”
By offering both education and emotional support, this new electronic storybook helps children with aHUS navigate their diagnosis and treatment while also providing a sense of control and empowerment. It highlights the importance of understanding and managing rare diseases in a way that engages young minds and reassures both children and their families.
