One of the tangible ways we work to raise disease awareness is by developing tools and resources to help educate patients, caregivers, and families about rare diseases. Inspired by patients for patients, Alexion has partnered with the broader rare disease community to create the Inspired By book series, a collection of stories that aim to help families with young children talk about rare diseases in an approachable and age-appropriate way.
In June 2021, Alexion introduced the first book in the Inspired By series, Klara’s Talent, during MG (myasthenia gravis) Awareness Month in the United States. Klara’s Talent was inspired by Rachel, a real mom living with generalized myasthenia gravis (gMG), the more severe and generalized form of MG, a debilitating, chronic, and progressive autoimmune neuromuscular disease.1-4 While speaking with Alexion in 2019, Rachel wondered aloud how she would explain gMG to her young daughter, saying, “I wish there was a book I could read to her.” In that moment, Klara’s Talent was born.
In the story, Mommy Koala cannot attend her daughter Klara’s talent show due to her gMG symptoms, so Klara adapts and brings the show to her mom instead. Using rhyme and comforting illustrations, the book explains that even though gMG can make simple activities difficult, for some families, managing gMG is a normal part of life.
The Inspired By book series has since expanded to include a new book dedicated to young patients and families affected by atypical hemolytic uremic syndrome (aHUS), a genetic, chronic, rare disease that can either be caused by genetics or a trigger that can progressively damage vital organs that can lead to stroke, heart attack, kidney failure, and death.5-6
A Day with Nurse Jen, released in advance of aHUS Awareness Day, which is recognized on September 24 each year, was inspired by Jennifer, a pediatric nurse who supports children and adolescents living with aHUS. As the book’s title suggests, the story takes the reader through a day with Nurse Jen as she works with three pediatric patients who have been diagnosed with aHUS to help them better understand and manage their disease. In the end, what makes Nurse Jen’s character so special to the patients she helps is that she lives with aHUS, too. Like Klara’s Talent, A Day with Nurse Jen embodies Alexion’s commitment to the rare disease community and raising disease awareness among people of all ages.
To order a complimentary copy of Klara’s Talent or A Day with Nurse Jen for yourself, someone you know affected by gMG or aHUS or a patient support group, please contact Alexion at OneSource@alexion.com or 1.888.765.4747.
1. Huda R, Tüzün E, Christadoss P. Targeting complement system to treat myasthenia gravis. Rev Neurosci. 2014;25(4):575-583.
2. Howard JF, Barohn RJ, Cutter GR, et al. A randomized, double-blind, placebo-controlled phase II study of eculizumab in patients with refractory generalized myasthenia gravis. Muscle Nerve. 2013;48(1):76-84.
3. National Institute of Neurological Disorders and Stroke. Myasthenia gravis fact sheet. http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm. Accessed September 25, 2019.
4. Meriggioli MN, Sanders DB. Autoimmune myasthenia gravis: emerging clinical and biological heterogeneity. Lancet Neurol. 2009;8(5):475-490.
5. Benz K, Amann K. Thrombotic microangiopathy: new insights. Curr Opin Nephrol Hypertens. 2010;19(3):242-247.
6. Tsai HM. The molecular biology of thrombotic microangiopathy. Kidney Int. 2006;70(1):16-23.