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Kids with HAE seldom meet other children who have this ultra-rare condition and often feel isolated and frustrated by the lack of understanding among their peers.
FAIRFAX, VA, June 15, 2021 /24-7PressRelease/ -- Chronic Disease Day on July 10 aims to bring attention and resources to rare and unpreventable conditions such as Hereditary Angioedema (HAE), which affects about one in 10,000-50,000 people worldwide. HAE is a very rare and potentially life-threatening genetic condition that involves recurrent, severe swelling in the hands, feet, stomach, face, and/or throat. Swelling in the airway can restrict breathing and be fatal. Symptoms of HAE usually appear early in life, most often by age 13, and may increase in severity after puberty. Kids with HAE seldom meet other children who have this ultra-rare condition and often feel isolated and frustrated by the lack of understanding among their peers.
To bridge this gap, the US Hereditary Angioedema Association (HAEA) published a series of books about Nico, a young boy with HAE. Nico's stories offer an age-appropriate approach that helps children with HAE understand the condition and share information with their friends and others outside of their families. The final book is being released to coincide with Chronic Disease Day. The three books in the series—Nico's Lunchbox, Nico's Surprise, and Nico's Story—are written by Caryn Seiler, whose sister and nephew have HAE, and are available in both English and Spanish.
What HAE Families are Saying about the Books
"While I was reading [the Nico books], I cried because I truly empathize with Nico. Anyone with HAE has felt all alone with this disease and just wished someone else would understand." -Jessica Palmer, Fort Smith, Arkansas
"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!" -Amy Galindo, Freeport, Illinois
"My eight-year-old LOVED the book and couldn't wait to take it to school to share with her friends and to be able to explain what HAE was and her experiences as a sibling of a patient." -Lisa Chacon, Union, New Jersey
About the US Hereditary Angioedema Association
The HAEA is an advocacy and research organization committed to actively engaging our community in a wide variety of grassroots activities that promote HAE education and awareness. We provide personalized services to address the unique needs of people with HAE and their families, which includes helping them secure access to and reimbursement for modern HAE medicines. Our great success in supporting clinical research has resulted in a variety of FDA-approved therapeutic options. We work closely with expert physicians to continuously upgrade our community's quality of life through improving diagnosis and knowledge of the condition, and encourage an individualized approach to selecting an optimal treatment. The HAEA is product and company neutral and continues to enthusiastically support drug discovery research aimed at the next generation of HAE therapies.
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