Juggling work and family while having hereditary angioedema (HAE) is not an easy task. I have learned that, for me, open communication is the key to this juggling act, but while it is important to be candid about my condition, teamwork is just as essential.
At times, treating my hereditary angioedema (HAE) attacks seems like an overwhelming task. Attacks seem to start without warning, and the severity and location vary from one to the next. But I found a tool that not only helps me keep track of my attacks, but also to recognize patterns.
Some of you may be familiar with the Hereditary Angioedema Association, or HAEA , and some not so much. The HAEA is a non-profit patient advocacy organization that, in their own words, “focuses on increasing HAE awareness and education, diagnosis, empowering patient access to therapy and fostering groundbreaking research that includes finding a cure”. [Please note: Shire is not responsible for the content provided by third parties on any websites or information distributed by HAE support groups or organizations.]
Hereditary angioedema (HAE) attacks can be unpredictable and frightening. After getting my diagnosis, I thought about a time when I had my most terrifying attack of swelling, which left me panicked, overwhelmed, and feeling ill-equipped in an emergency room. It was a difficult lesson, but after my diagnosis, it became clear to me that preparing in advance for an ER trip is of utmost importance.
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.