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HAE and Kids

Hereditary angioedema, a challenging rare disease to manage, causes serious swelling episodes. Children can have them, too.


CSL Behring recently announced a treatment option for children who have hereditary angioedema, a dangerous rare disease that can cause potentially fatal swelling episodes.

Until 1979, those who had HAE went undiagnosed – or diagnosed without a viable treatment option – until scientists discovered the reason why HAE occurs. It’s primarily caused by missing or low levels of the plasma protein C1 esterase inhibitor (C1-INH).

Last year, the HAE community celebrated the 40th anniversary of a milestone: The absent plasma protein could be replaced through C1-INH therapy, reducing the likelihood of attacks. Attacks can be both disfiguring and, especially dangerous, when they affect breathing and other critical body systems.

Parents of children who have HAE naturally worry about their kids, especially when they’re away from home. Learn how two parents – who also have HAE themselves – keep their kids safe and help inform others about the disease.

Cheryl French: How to Tell Teachers About Your Child’s Rare Disease

Machelle Pecoraro: What Kids Need to Know

To reach children who have HAE, U.S. Hereditary Angioedema Association teamed up with a children’s author to create a three-book series. “Nico’s Lunch,” by Caryn Sonberg Seiler, is the first installment designed to accurately and sensitively explain hereditary angioedema. Learn more at the U.S. HAEA website