Patient Stories
Patient Stories
In Their Own Words

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 the same 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 to you and one may reveal aspects of living with HAE that you have never encountered yourself. Additional stories will be profiled as they are received and archived so that you can view them again at any time.

Submit Your Own Patient Story


Tad's Story

I was diagnosed with HAE in 1992, when I was 24 years old, almost by accident, at an emergency walk-in clinic. At first the doctors thought that I had a spider bite on my hand even though they could not find any bite marks.   read more...

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.   read more...

Angela's Story

My name is Angela, I am 32 years old.

Below 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.   read more...

Linda's Story

For most teens in modern societies, adolescence is a critical period of social and psychological development. It is a time that marks the beginning of movement away from the parents, and toward the formation of life-long bonds with others. It is also a period of intense need to be accepted by friends, and to that end (especially for the girls), to look like, sound like, think like, and be exactly like the rest of the group.   read more...