New Interactive Storybook Aims to Educate Children with Rare Kidney Disease into a World of Adventure and Understanding
The interactive fantasy e-book “Revealing the Secrets of aHUS” puts young children at the centre of the story as they explore and learn with their families about atypical Haemolytic Uraemic Syndrome (aHUS)
Estimated to affect 0.4 - 0.5 people per million,1 aHUS is a genetic, ultra-rare disease, which can progressively damage vital organs, such as the kidneys, and can affect both children and adults.1 The interactive storybook is designed to support children diagnosed with aHUS and their families to better understand the condition.
Developed in consultation with Kidney Care
“In the
Aimed at 6–10-year-olds, readers become the heroes of their own story. By personalising the main character – choosing their name, appearance, and outfit – children step into the shoes of the ‘Guardian of Healthoria’, embarking on a mission to restore a once-thriving land overrun by naughty pixies.
Along the way, they battle mythical creatures, solve puzzles, and uncover magical artefacts, all while learning about their kidneys, the immune system, and how to help manage the impact of aHUS on their body and mental health. Readers are offered a mix of quests and challenges – riddles, mazes, and jigsaws – that encourage children to absorb key healthcare information while having fun. At each stage of their journey, young adventurers collect rewards and receive memorable recaps of what they have learned, making complex medical concepts easier to understand.
Laurie Cuthbert, Director of Fundraising, Marketing and Communications at Kidney Care
Available on a laptop, tablet, mobile phone and in print, there are four key areas of focus throughout the book as the character navigates their way through. This includes 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.
“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, Nurse Consultant (aHUS) for Newcastle Hospitals’ National Renal Complement Therapeutics Centre (NRCTC) said. “This book clearly explains the complexities of aHUS and how to cope with the challenges of living with a rare disease. It 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.”
To learn more about aHUS and how to find support available for patients, visit infokid.org.uk.
To access the storybook visit: https://www.healthinote.com/ahus.
Alexion
Alexion, AstraZeneca Rare Disease is focused on serving patients and families affected by rare diseases and devastating conditions through the discovery, development and delivery of life-changing medicines. A pioneering leader in rare disease for more than three decades, Alexion was the first to translate the complex biology of the complement system into transformative medicines, and today it continues to build a diversified pipeline across disease areas with significant unmet need, using an array of innovative modalities. As part of AstraZeneca, Alexion is continually expanding its global geographic footprint to serve more people with rare disease around the world. It is headquartered in
AstraZeneca
AstraZeneca (LSE/STO/Nasdaq: AZN) is a global, science-led biopharmaceutical company that focuses on the discovery, development, and commercialisation of prescription medicines in Oncology, Rare Diseases, and BioPharmaceuticals, including Cardiovascular, Renal & Metabolism, and Respiratory & Immunology. Based in
About aHUS
Atypical haemolytic uraemic syndrome (aHUS) is an ultra-rare disease that affects both children and adults and can lead to potentially irreversible damage to kidneys and other vital organs, sudden or progressive kidney failure (requiring dialysis or transplant) and premature death.1 aHUS is characterised by inflammation and the formation of blood clots in small blood vessels throughout the body (thrombotic microangiopathy [TMA]) mediated by chronic, uncontrolled activation of the complement system, which is part of the body’s immune system. aHUS is characterised by reduced platelet count (thrombocytopenia), microangiopathic haemolytic anaemia (as a result of haemolysis [destruction of red blood cells]) and acute kidney injury (AKI).3 Early and careful diagnosis of aHUS is critical, as many coexisting diseases and events are known or suspected to activate the complement cascade, and as patients may not necessarily present with the classic triad of thrombocytopenia, haemolytic anaemia and renal impairment or may have less severe renal involvement.3 Available tests can help distinguish aHUS from other haemolytic diseases with similar symptoms such as HUS caused by Shiga toxin-producing Escherichia coli (STEC-HUS) and thrombotic thrombocytopenic purpura (TTP).3
About Kidney Care
Kidney Care
We believe that no-one should face kidney disease alone; email support@kidneycareuk.org or call 0808 801 00 00.
References
- NRCTC Annual Report (2022). Available at: https://www.atypicalhus.co.uk/wp-content/uploads/2022/09/NRCTC-Annual-Report.pdf [Last accessed February 2025]
-
GOV
UK (2021).UK Rare Diseases Framework. Available at: https://www.gov.uk/government/publications/uk-rare-diseases-framework [Accessed: February 2025] -
Rare Check (2017) Atypical Hemolytic Uremic Syndrome. Available at: https://checkrare.com/atypical-hemolytic-uremic-syndrome/ [Accessed: February 2025]
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Media enquiries:
Alexion, AstraZeneca Rare Disease
Lucy Pritchard
07876 289 795
lucy.pritchard@alexion.com
Real Chemistry
James Watkins
07917 904 171
jawatkins@realchemistry.com
Source: Alexion