Of the people I have met, I’ve found that many of them don’t know about hereditary angioedema (HAE). Even some doctors are unfamiliar, leaving me to explain my disease when I have to make a trip to the emergency room with an HAE attack. For these reasons, I am dedicated to informing others about HAE.
I gazed out the window to distract myself from the familiar, sharp pains. We’d had some rather suspicious sandwiches for lunch; perhaps I was just having indigestion? I returned to work, but not 20 minutes later, I felt a sudden pain in my throat threatening my ability to breathe.
Before my hereditary angioedema (HAE) diagnosis, I didn’t know what was happening to me when I’d experience pain from what I now know was an HAE abdominal attack. I always found it difficult to explain to my family how my stomach aches seemed different from everyone else’s stomach aches. When I was getting married and expanding my family, I wondered, “How the heck am I going to explain this crazy thing?” Well, I just did the best I could. Sometimes, though, HAE attacks can happen that I just don’t want to talk about.
My husband and I learned early on that it is important to share as much information as possible with our healthcare team. That way, they can help us treat my husband’s hereditary angioedema (HAE) attacks.
Learning to ask for help has been a difficult journey for me. I am a strong person, but sometimes I can be prideful and stubborn to a fault. But coping with HAE can be difficult for both patients and caregivers. By shutting out those I love, I’ve realized that doesn’t help them help me. Now, I ask for support from my loved ones, because I believe they want to help me.