A rare disease like Hereditary Angioedema (HAE) makes attending school and socializing difficult, which is why Caryn Seiler wrote a series of books featuring Nico, a young boy with the disease.
"As an educator, I know how important it is for children to connect with characters and see themselves in the books they read,” Seiler said. “I have two close family members with HAE, and I have seen firsthand how isolating it can be to have an ultra-rare disease. I wrote this children’s book series for the (U.S. Hereditary Angioedema Association) to help kids like my nephew know that they are not alone."
Seiler wrote “Nico’s Lunchbox” and “Nico’s Surprise” and will launch the third book in the series, “Nico’s Story,” on July 10 – Chronic Disease Day. In the latest installment, Nico – in suit and tie – heads to Washington, D.C. with his family to join with other HAE advocates for Capitol Hill Day, a day when HAE advocates visit the nation’s capital and meet members of Congress.
According to the U.S. Hereditary Angioedema Association (HAEA) which published the book, HAE affects one in 10,000 to 50,000 people by the age of 13. Patients who have HAE are missing or have low levels of a protein called C1 esterase inhibitor (C1-INH) or it does not function properly, according to HAEA. The genetic condition causes dangerous swelling in the hands, feet, stomach, face, and or throat – which can restrict breathing and be fatal.
Sudden swelling episodes and frequent absences from activities for treatment can prevent kids from socializing and participating in the usual rituals of childhood.
“I dealt with a lot of bullying and people ostracizing me because of the way I looked – they didn’t know what was wrong with me,” Dennis, a patient with HAE, told the Las Vegas Review Journal.
The Nico books can help build a sense of empathy and understanding, plus they help kids understand they’re not the only ones who have HAE.
"As a four-year-old with HAE, my daughter doesn't know another child that is going through what she goes through. Nico felt relatable to her and gave her the feeling that she wasn't alone in her experiences!" said Amy Galindo, from Freeport, Illinois in the press release for the series.
Dr. Raffi Tachdjian also praised the books.
"The three-part book series offers a valuable resource that a child with HAE can share with friends and classmates to take the mystery out of what causes swelling and help peers better understand the condition," Tachdjian said.