Blindsided by HAE

STACEY: Hi, I’m Stacey. I knew my husband, David, frequently didn’t feel well, but I had no idea he had HAE. He didn’t want to talk about it to anyone not even with me. So the first time I saw him have an attack I was blindsided. There was my husband lying on the bathroom floor in tears from the pain. He said he felt like he was being stabbed with a sword and the sword was slowly being turned. All I could do was cry. I just felt so helpless. Afterwards, David finally told me about his HAE and he swore me to secrecy, which I was not on board with. Eventually, we both had to learn to be more proactive and open about HAE. Now we’re not hiding and we refuse to allow HAE to define our lives. After keeping quiet for so long, it compels me to share our story with others to tell them that we have the power to stay informed and stay connected. Go to HAE programs and conferences and remember that we’re not alone. If you are a caregiver for someone living with HAE, you might like my other posts on the Hey HAE blog.