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Living With HAE

Video: Cheryl describes her journey coping with the rare disease hereditary angioedema (HAE) and how it has impacted her family.


Hereditary angioedema (HAE) burdens patients with unpredictable, disruptive and potentially deadly swelling episodes. Patient Cheryl F. shared this video message with CSL leaders to explain what it’s like to live with the rare disease and what gives her hope.

People with HAE are missing or have low levels of a protein called C1 esterase inhibitor (C1-INH); in some cases, the C1-INH levels are sufficient but the protein does not function properly. The defect with C1-INH lies within a person's genetic code, which is why HAE runs in families. Replacement therapy became available in 1979.

Learn more about HAE.

May 16 is HAE Day. Learn how it’s being observed.