Explaining something as complicated as a rare disease to a child can be difficult. That’s why Alexion Pharmaceuticals created a books series titled “Inspired By.” The series is a way to open the conversation between children and their families when it comes to rare diseases, especially as it can be a confusing and even frightening topic.
The latest installation is titled “A Day with Nurse Jen,” and it focuses on the rare and chronic disorder atypical hemolytic uremic syndrome (aHUS).
“A Day with Nurse Jen”
These books use stories from real-life patients to explain rare diseases to children, giving them experiences to relate to. This book follows the story of 10-year-old Emma Porter.
Emma has been living with her aHUS diagnosis for three years. The doctors told her she had a rare disease after her mother, Colleen, rushed her to the emergency room because she saw her daughter turning yellow. The Porters didn’t initially know anything about aHUS, and they were terrified of the unknowns.
On their journey, they met plenty of doctors, nurses, and other hospital staff, one of whom was Jen Lamothe, otherwise known as “Nurse Jen.” Lamothe is a program coordinator at the Pediatric Nephrology Center of Excellence at Levine Children’s Hospital. She worked with the Porters to translate Emma’s story into “A Day with Nurse Jen.”
They’re very happy with the latest installment of the “Inspired By” series, and they hope that it shows newly diagnosed kids that they’re not alone and life will be normal.
Click here to request a free copy of the series.
Atypical hemolytic uremic syndrome is a rare kidney function disorder. It causes fatigue, irritability, high blood pressure, thrombocytopenia, hemolytic anemia, blood in the urine, and acute kidney failure. All of these symptoms are the result of a genetic predisposition in addition to an environmental trigger. Common events that set off aHUS include the flu, chickenpox, or pregnancy. Diagnosis of this condition can be difficult, as it is very rare and faces low awareness. Doctors will look for malfunctioning kidneys, hemolytic anemia, a low platelet count, and known genetic mutations. After a diagnosis is established, doctors may recommend plasma therapy, blood transfusions, eculizumab, medications to expand blood vessels, blood pressure drugs, and other therapies.
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