Hereditary angioedema can affect family and friends almost as much as it affects the person diagnosed with it. It is very important to my husband and me that people understand that while HAE is a very serious disease, it certainly does not define who we are.
HAE and Family
I’ve met so many people in the HAE community over the years and it is hard for me to put into words how much what I refer to as my “hereditary angioedema (HAE) Family” means to me. Being able to spend time with other people who understand HAE means the world to me. Though members of my “HAE family” live in all parts of the country, we seem to share an immediate, deep connection whenever and however we get together.
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.
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.
At the end of my six year search for a diagnosis, I was unbelievably relieved to hear the words “hereditary angioedema.” Finally, a name for my condition! But wait, “hereditary”? How was that possible? I was the only one in my family suffering from these debilitating attacks of swelling and pain.