A New Treatment for Kids With HAE Shines the Light on Hope

Hereditary angioedema (HAE) causes unexpected swelling in the hands, feet, abdomen, and face. HAE can be fatal when the patient has a laryngeal attack, where swelling in the throat makes it impossible to breathe.

Hereditary angioedema occurs in one out of 10,000 to 50,000 people, and until the late 1970s, there were no treatments for acute attacks. Many older patients remember suffering from painful swells without knowing what was causing them. And because HAE is handed down from generation to generation, other members of their family with the rare disorder also suffered. Fortunately, that’s changed. Today, there are a number of treatments that offer relief to hereditary angioedema patients.

Treatment for acute attacks has offered tremendous relief to patients, and now a drug has had its FDA-approved usage expanded to include use by children under the age of 12.

It’s called Berinert (C1 esterase inhibitor [human]) and the pharma company that developed the drug is CLS Behring. This is very good news for kids who have HAE, because previously, other treatments were not indicated for anyone under 12 years old. In this writer’s opinion, this is also great news for parents who now have a medication to help their children when an acute HAE attack happens. Berinert is used “on demand,” which means at the first sign of an attack, the drug can be administered to alleviate the swelling.

Want to read more about the approval? Click here!


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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