Storybook can help kids understand rare kidney disease

It can be hard for children to understand complicated concepts like illness, and parents often struggle to decide between telling them about a diagnosis early on, or holding off in order to protect them.

The advice from patient advocacy groups is generally to talk about their condition as early as possible, as children cope best if they are given honest, age-appropriate information and have a chance to ask questions. That can, however, be a tough ask for parents or other carers dealing with a difficult and life-altering diagnosis. 

Recognising that challenge, AstraZeneca's rare disease unit Alexion has launched an interactive storybook that can help children with rare kidney disease atypical haemolytic uraemic syndrome (aHUS) understand their condition and encourage open discussion with their family members.

The e-book – which is called Revealing the Secrets of aHUS and is aimed at six- to 10-year-olds – is designed to help children understand aHUS by placing them at the centre of a mythical adventure in which they carry out a quest to understand the disease, as well as its treatment and care.

They can personalise the name, appearance, and outfit of the lead character in the book, the 'Guardian of Healthoria', whose mission is to restore a once-thriving land overrun by naughty pixies. Along the way, the hero battles creatures, solves puzzles, and uncovers magical artefacts, all while learning about the kidneys, the immune system, and how they can help manage the impact of aHUS on their body and mental health.

The intention is to translate complex medical terms into accessible information for children, according to Alexion, as well as to build awareness of the practical and emotional support available. It has been developed in consultation with medical charity Kidney Care UK.

The book – available on laptop, tablet, mobile phone, and in print – covers four key areas; namely, what to expect through the patient journey, how the kidneys are affected, learning about and dealing with their emotions and how to find support, and the impact aHUS can have on children's daily lives. It is intended to be read together by children who have a diagnosis of aHUS and a carer.

"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," according to Christine Maville, a nurse consultant specialising in aHUS at Newcastle Hospitals' National Renal Complement Therapeutics Centre (NRCTC).

"This book […] 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."

aHUS is an ultra-rare disease caused by abnormalities in the complement system that is estimated to affect only around one person in every two million. It leads to progressive damage to the kidneys, as well as other vital organs. There is, however, treatment available that can delay or prevent kidney failure and stave off the need for other treatments like dialysis.

Laurie Cuthbert, who is director of fundraising, marketing, and communications at Kidney Care UK, said: "The children and families we support at the charity 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."

Alexion hopes its interactive storybook approach could also be used to help other children with rare diseases, who are estimated to account for around 75% of the total UK rare disease population of 3.5 million people.