The interactive storybook Revealing the Secrets of aHUS puts young children at the centre of the story as they explore and learn about the rare kidney disease Atypical Haemolytic Uraemic Syndrome (aHUS).
Produced by Alexion, AstraZeneca Rare Disease, in consultation with the National Renal Complement Therapeutics Centre and Kidney Care UK, the interactive book will help children understand their condition by translating complex medical terms into accessible information, as well as building awareness of the practical and emotional support available.
aHUS is a genetic, ultra-rare disease that can progressively damage vital organs, such as the kidneys, and can affect both children and adults. The interactive storybook is designed to support children diagnosed with aHUS and their families to better understand the condition.
In the UK, 3.5 million people live with a rare disease, and it’s estimated that 75% of those conditions affect children. At Alexion, and as part of the rare disease ecosystem, we have a responsibility to support these young people with understanding and navigating complex diseases like aHUS. Working with our medical and patient advocacy partners, we’re now able to provide children with a way to learn about their disease and importantly help them feel in control.Deborah Richards, General Manager, Alexion, AstraZeneca Rare Disease
By blending complex healthcare information with imaginative play, the storybook aims to demystify aHUS for children aged 6-10. After personalising the main character by choosing their name, appearance, and outfit, readers are offered a mix of quests and challenges – riddles, mazes, and jigsaws – to encourage them to absorb key healthcare information while having fun.
"The children and families we support at Kidney Care UK show the most incredible levels of resilience. Having a rare and complex condition like aHUS can be challenging to both live with and to understand, which is why we're delighted to be involved with Revealing the secrets of aHUS. It gives children the chance to see themselves in a character and story as well as learning more about their condition. It also helps to create a space where parents and carers can learn more about aHUS and how they can support their child to live with this complex condition together."Laurie Cuthbert, Director of Marketing, Fundraising & Communications, Kidney Care UK
Available on a laptop, tablet, mobile phone and printable, there are four key areas of focus throughout the book: what to expect through the patient journey, how the kidneys are affected, learning about and dealing with emotions and how to find support, and the impact aHUS can have on children’s daily lives.
More information about aHUS and the support available for children living with kidney disease is available on the infoKID website.