Understanding the ins and outs of a rare disease like atypical hemolytic uremic syndrome (aHUS) is a difficult task for anyone, but it can be especially confusing for young children, in whom the rare kidney disease is most common.
To guide them through an aHUS diagnosis and subsequent treatment, Alexion Pharmaceuticals has released an interactive storybook aimed at “demystifying” the disease for 6- to 10-year-olds, according to a Wednesday announcement from AstraZeneca’s rare disease unit.
Kids and their families can access the “Revealing the Secrets of aHUS” book online—where, after creating a character, they can also choose to print out a non-interactive PDF version of the story. The book weaves a fantasy tale that anoints the reader as the “Guardian of Healthoria,” tasked with protecting a mystical realm that’s been overtaken by pixies.
Stops throughout the hero’s mission offer both games and information about aHUS, shared in ways that are easy for kids to understand. For example, one segment in the book depicts the body’s immune system as an army that’s able to fight off “nasty bugs or germs,” but that, in aHUS, continues fighting even after “the invaders have gone.”
The book, which Alexion developed in consultation with Kidney Care UK and the Newcastle National Renal Complement Therapeutics Centre, focuses on providing kids and their caregivers with information in four key areas: how aHUS affects the kidneys, its impact on patients’ daily lives, details of the patient journey, and tips for dealing with complex emotions and finding support.
The story is unbranded, but Alexion is the maker of aHUS treatments Soliris and its newer, upgraded sibling Ultomiris, to which Soliris patients are encouraged to switch.
“In the U.K., 3.5 million people live with a rare disease; it’s estimated that 75% of those conditions affect children. At Alexion, we work in partnership with healthcare providers to support these young people, helping them better understand a complex disease like aHUS,” Deborah Richards, general manager of Alexion in the U.K. and Ireland, said in this week’s release.
“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,” she added.
This isn’t the first time that Alexion has weaved an imaginative tale to help children better understand their rare diseases. In 2021, the drugmaker launched another book series, dubbed “Inspired By,” which sought to tell the real-life stories of patients with conditions like aHUS and generalized myasthenia gravis.
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