Patient Stories

Everyone who has HAE knows that its symptoms are astonishingly individual. No two people (even within the same family) share the exact same triggers, severity of attacks or even journey to diagnosis. Every HAE story is unique and valuable.

The patient stories profiled here tell of struggles and triumphs. One may sound very familiar or reveal aspects of living with HAE that you have never encountered yourself. At least one story will be profiled each month and archived so that you can view them again at any time.

We invite you to read an engrossing HAE profile below and to learn how to submit your own Patient Story.

Latest Patient Story

Apr 2013: Hope's story

My name is Hope and I am 55 years old. I live in a small town in Utah. I was diagnosed with HAE in 2010. My HAE story begins with my first pregnancy at the age of 34. Before that time I had no noticeable symptoms, except a severe allergy to bee stings. Just a [...]

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Feb 2013: Angela's story

My name is Angela, I am 32 years old. Above is a picture of my dad that he took himself about 4 hours before an HAE attack (brought on by an abscessed tooth and a sinus infection) killed him. His throat swelled shut standing in his front yard. This wasn’t the first facial swelling. Even [...]

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Jan 2013: Keri's story

My name is Keri. I currently reside in the suburbs of Washington, D.C., where I am a stay at home mom for my 3 children. I am 46 years old and have suffered with HAE attacks since childhood, but was not officially diagnosed until shortly after turning 40. My grandfather had HAE, my mother has [...]

Read Keri's story