I’ve lived with hereditary angioedema (HAE) for almost my entire life, so after a while, I started to think I knew everything there is to know about my HAE. Nothing could surprise me. But HAE has a funny way of throwing me a curveball when I least expect it…
My six-year road to a diagnosis of hereditary angioedema (HAE) was full of hopeful highs and tremendously agonizing lows. It was difficult, frustrating, painful, and at times, I felt I could go no further. Yet, even in my darkest moments, I found inspiration. I will be eternally grateful to the three things that inspired me to never stop fighting.
For many years of my life, I was worried about what I would do if I had a hereditary angioedema attack when traveling. But I have learned that the key to enjoying vacations with my HAE is proper packing and planning!
Hereditary angioedema—finding a treatment plan and the hardships that may come with a treatment, such as access issues and dealing with side effects—can affect people in different ways. These challenges around HAE may result in intimacy issues between someone with HAE and the person who cares for them.
“Come to the party anyway!” I can’t tell you how often I’ve heard this! It happens almost every time I have to cancel plans because of an acute hereditary angioedema (HAE) attack. Family and friends who don’t have HAE sometimes don’t understand how serious and disfiguring HAE attacks can be—even when they really want to understand. But I’m always happy to answer any questions they may have.