Interactive e-book aims to help children better understand aHUS
New storybook for ages 6-10 developed by pharmaceutical, UK patient group
An interactive electronic storybook, or e-book, designed to help children with atypical hemolytic uremic syndrome (aHUS) better understand their rare disease, has been launched by Alexion, AstraZeneca Rare Disease, which markets two aHUS therapies.
Called “Revealing the Secrets of aHUS,” the fantasy e-book uses imaginative play to educate children and provide clarity about aHUS in ways that are fun and engaging — and appropriate for young children. It’s designed to be read by youth ages 6-10, along with their caregivers. The interactive e-book is available on Healthinote, a website that bills itself as an “aHUS support hub.”
Alexion, which markets the aHUS therapies Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz), developed the book in collaboration with the patient support charity Kidney Care UK and the Newcastle National Renal Complement Therapeutics Center, known as NRCTC, in Tyne, England.
“Navigating through a disease is hard for anyone, at any age, but it can be particularly tough for children to fully understand the implications and support available,” Christine Maville, a nurse consultant for NRCTC, said in an Alexion press release, adding that “this book clearly explains the complexities of aHUS and how to cope with the challenges of living with a rare disease.”
According to Maville, the storybook “is a valuable resource, and hopefully one which can brighten and engage the imagination of children diagnosed with aHUS and remind them they are not alone.”
Children learn about aHUS in interactive e-book they customize
aHUS is a very rare disease in which the abnormal activation of the immune system’s complement cascade causes blood clots to form in small blood vessels. This drives progressive organ damage, especially in the kidneys. Symptoms can emerge at any age, though it’s a little more common for them to first manifest during childhood rather than later in life.
The goal of the new e-book is to guide children through the journey of aHUS diagnosis and treatment in an engaging way, according to its developers.
“Working with 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,” explained Deborah Richards, general manager for Alexion.
The story follows the fictional Guardian of Healthoria, whose mission is to restore a mythical land that’s been overrun by naughty pixies. To help readers take ownership of the mission, they’re able to personalize the hero by choosing a name, appearance, and outfit.
Through the journey, children battle mythical creatures, solve puzzles, and uncover magical artifacts. A variety of quests and challenges, like riddles, mazes, and jigsaws, are part of the expedition.
In completing these activities, children will learn about their kidneys, the immune system, and the things they can do to minimize the impact aHUS has on their body and mental health. Throughout, the book works to translate complex medical terms in ways that are more easily understandable to youngsters.
Working with 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.
There are four major learning objectives in the book: what to expect in the patient journey, how the kidneys are affected, how to deal with emotions and find support, and understanding the impact aHUS can have on a child’s daily life.
As children complete different activities within the interactive story, they collect rewards and are provided recaps on what they’ve learned. The ultimate goal is to help children engage with important information about their health while having fun.
Laurie Cuthbert, director of fundraising, marketing and communications for Kidney Care UK, a patient-centered charity in Great Britain, notes that the book “gives children the chance to see themselves in a character and story as well as learning more about their condition.”
The interactive e-book can be accessed via laptop, tablet, and mobile phone. A noninteractive version of the story can also be downloaded as a PDF after children have created their character.
According to Cuthbert, this storybook “helps to create a space where parents and carers can learn more about aHUS together and how they can support their child to live with this complex condition.”
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