My name is Angela, I am 32 years old.
To the right 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 so, he had decided it wasn't severe enough to go to the hospital. He waited – he waited too long. He passed away at the age of 47 just a few days after Thanksgiving. My father suffered for 33 years of his life swelling at different times , in different places – his face, hands, feet, genitalia, as well as stomach and intestinal tract. He sometimes swelled in several places at once.
My sister began swelling shortly after she became pregnant with her first child. She assumed it was related to the pregnancy and could not, would not believe that she was swelling like our dad did on so many occasions. She was finally tested shortly after dad died and was diagnosed with HAE Type II. She spent several years on very heavy pain medication daily (per her doctor's prescription) to try to prevent the pain of the swelling that had started coming several times a week. Recently she had a port put in her chest to receive infusions every 3 days. She now only has attacks about once a month and the severity has decreased significantly. Thankfully none of our children have been diagnosed with HAE yet.
Although I tested negative for HAE, I do swell on occasion, just not with the severity or for the length of time that seems to trouble the rest of my family.
Thank you for reading my HAE story.