As someone with HAE who is also a nurse, I think of myself first and foremost as a patient advocate, especially for the HAE community. I think it’s important that people learn more about HAE, specifically people in the field of medicine. I know I, for one, would not be standing here if not for the understanding of my grandmother and my hometown doctor.
When I was a little kid, I used to do this odd thing where I’d go to the top of a small hill, strike a dignified pose, and stand completely still. “This,” I would say, “is where one day they will erect a statue of me.” Now don’t ask me what I thought I would do to deserve that! I only knew that somehow I wanted to leave my mark on the world.
Sometimes it’s hard to figure out if I’m having an HAE attack or if some other medical issue is the problem. Hereditary angioedema swelling can happen in different parts of the body and be caused by so many different triggers—at least that’s how it is for me.
Because of my husband’s HAE, I’ve become close to many people in the hereditary angioedema community—they’ve become my “HAE Family.” I know I can count on them to understand what I’m going through, because they’ve been there, too.
Hereditary angioedema is a serious disease. So I don’t want anyone to think I’m making light of my HAE—or anyone else’s. But at the same time, I can’t spend my life being grim and serious about HAE 24/7. Keeping a positive attitude helps me to cope and maintain perspective about HAE’s impact on my life.